Infant Feeding for Potential Celiac disease

Newest information link:

http://www.cureceliacdisease.org/wp-content/uploads/CdC_Newsletter_2016_Issue02.pdf

INFANT FEEDING PRACTICES: WHAT WE KNOW AND WHAT WE DON’T KNOW BY STEFANO GUANDALINI, MD

Momma says Magnesium

Hey there were times when I didn't listen to Mom, but those teen foolish times are over and so when I told her I was aching all over and had ongoing stomach problems unrelated to my disease, she said Magnesium, so I listened!


http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

https://www.yahoo.com/health/magnesium-spray-might-be-the-answer-to-all-your-119603550980.html

Now I know why.  

Image from Live Healthy with Patti

This stuff is important so in the midst of my closet cleanse (remember I'm sucking down on spices in the pantry purge?)  I'm going to take the rest of the liquid Magnesium I have left.  It's the nastiest flavor and I have to Plug (the nose) and Chug, (the dose) but it's worth it.

Twelve Reasons to JUST TRY a Gluten-free Diet for ONE month

Could you be celiac or gluten intolerant and not know it? Check the following list of tell-tale signs and take the challenge of an entirely, 100% gluten-free diet--for just one month to find out for sure.

Gluten-free? Isn't that just for my weird vegan crunchy-granola friends? Not if you identify with any of the following indications. If you or a close family member has experienced one of these symptoms or diseases, a gluten-free diet can be ameliorating or even curative. 

As I said recently to a college friend diagnosed with an IBD that would cost him $20,000 a year for the rest of his life (hopefully 50+ more years) in medications, 

"Hey, isn't it worth A MILLION DOLLARS to try it for ONE MONTH?" 

(This logic also somehow resolved his worry that "it's so expensive to go GF"! Go figure.) If it doesn't fix it, you're a month gluten-less. If it does, you're an entire lifetime richer. 

Why haven't I heard about this before? Unfortunately, there is no prescription drug company lobbying for more studies about how people can stop taking their drug and save millions by changing their diet. Surprise. 

So who says that it will help? The links that follow are a combination of Mayo Clinic publications, University studies, MDs and PhDs who have published on the topic as well as a sheer mass of anecdotal evidence. Please feel free to do more research and post anything you want to share as a comment. 

Don't I have to wait for a diagnosis? Terina was once faced with a friend who had tried the GF diet and had immediate relief from her lifetime chronic pain. This result prompted her to get a test to find out "once and for all" if she was gluten-intolerant. She called Terina in tears the day of the test and asked, "What am I going to do if it's NEGATIVE?! Go back to being miserable?!" Terina replied, "ARE YOU KIDDING ME?! USE YOUR BRAIN!" Just kidding. But seriously: false negatives, along with yet un-test-for-able gluten sensitivity and gluten intolerance, are a huge problem in the medical world. This girl right here had a falsely negative skin biopsy, blood test and stomach scope before a fecal test (through EnteroLab) and cheek swab finally came back blatantly positive... 15 years of suffering later. Thanks, medicine. It's up to you, of course. 

The twelve tell-tale signs: 

12. "Addiction" to carbs. Higher gluten in wheat because of recent food processing changes (a la Wheat Belly's author, Dr. William Davis) makes modern wheat a completely different, highly addictive grain than what human digestion systems have been processing for thousands of years. 
11. High blood sugar (pre-diabetic or diabetic) or hypertension or low blood sugar. Type 1 diabetes is an autoimmune disorder, which we'll read more about further down. 
10. Asthma, arthritis, hypertension, fibromyalgia, tension headaches and migraines or temporomandibular joint (TMJ) disorders: more autoimmune disorders, along with a few "garbage" diagnoses when doctors just give a name to a pain.
9. Chronic fatigue and/or anemia. So tired you fall asleep at stop lights and have to call a babysitter to watch your kids while you're home because you keep falling asleep in the middle of board games? Terina was before her diet change. Celiac disease affects your ability to absorb iron--so no matter how many supplements you take (or how many cans of spinach you gulp, Popeye-style, before you give blood) you can't increase your hematocrit levels.
8. Any other autoimmune disorders (Lupus, alopecia, rheumatoid arthritis, vitiligo, multiple sclerosis, autoimmune hepatitis, and about 30 others I can't pronounce). "I would suggest that if you have an autoimmune disease you get tested for gluten sensitivity, and if you're gluten intolerant, you should get screened for autoimmunity" says this article by MD Amy Myers (read the whole thing if you have time, it's really comprehensive).
7. ANY Irritable Bowel Syndrome (IBS) symptoms (diarrhea, constipation, bloating, heartburn), and any Inflammatory Bowel Diseases (IBD) including Crohn's and Colitis (detractor here disproved by 100+ posts of UC non-celiacs here). This is an obvious one, people, it's even on wikipedia.
6. Thyroid/ Graves' disease/ Hashimoto's (more autoimmune disorders that aren't usually lumped with the others). Thyroid disease is another that many doctors still refuse to connect to gluten. Give 'em a couple years.
5. Odd or uncontrollable weight loss OR gain, or inability to lose or gain weight despite diet and exercise changes. Your body is calculated to keep you alive, but it starts wigging out when you're poisoning your own digestive tract ("wigging out" being a technical term for losing or holding onto fat stores or muscle tone in response to nutritional deficiencies--ie, your body won't lose fat when it's essentially starving.)
4. Skin rashes, including eczema and psoriasis: ever had the itch to, you know, tear your skin off your body? When it seems like a Niagara Falls of lotion won't fix it? Been there. Think about how you could take the family to Disneyland just from the lotion savings if going off gluten fixes THIS problem! 
3. Mental disease/disorders: schizophrenia, anxiety, depression, anorexia/bulimia. This connection is becoming better researched, but it's amazing how your own family tree and a little medical history can enlighten the subject. Is it just our family's curse that every adolescent girl gets anorexia? Might be connected to gluten.
2. Infertility (or here, including multiple miscarriage, especially before you try IVF) (try searching "go gluten free and get pregnant), missed/irregular or painful periods: "Clinical studies have shown that women with untreated celiac disease have a very high rate of infertility with difficulties in conceiving," "gluten can make your period absolutely miserable" and "adults may also have aforementioned symptoms but could also have unexplained pain, anemia, depression or anxiety, seizures, osteoporosis, infertility, canker sores, rash, migraines, irregular menstrual periods, poor teeth enamel or numbness in the hands or feet."
1. Understanding your friends/family: if you don't have gluten intolerance, yay. Chances (and statistics) are that your mom, friend, spouse, child, coworker or student will. Nothing shows support like co-suffering, and the amount of empathy you gain may change your experience a little bit next time you have to alter a birthday party or work gathering menu for the weird-GF-one-out.  

So how do I do it? Please save yourself the pain and money and don't just go buy every alternative gf bread and pasta on the shelves. This doctor explains why, but the basic reason is that when your intestinal tract is already full of holes, other grains will fall "out" of it just as easily as gluten. To heal, you need to start over with an entirely natural (only food God made--veggies, un-messed-with meats, fruits, water) diet. Too much, you cry? It's only a month. Remember that time your buddies dared you to stay off facebook or walk a mile everyday for a month (no? maybe I have weird friends...)? Remember that time you kept a crazy weird New Years Resolution for a month? You can do it. Let us help! Post if you're thinking about taking the challenge.

Click on the "a newbie?" link on the side of the main page for easy starter foods, including 100 GF foods you can eat now. 

Infertility and Celiac Link

Living 
Without
magazine is a great find for gluten-free (and other specialty) dieters. It recently had an article about the link between infertility, endometriosis, early menopause, irregular periods, absence of menstruation, multiple miscarriage, rates of C sections, low birth-weight babies, stillbirth and CELIAC.

It's worth it to read the whole article, but one excerpt I liked is as follows.

"According to RESOLVE, the National Infertility Association, one in eight couples is affected by infertility, defined as the inability to conceive or carry a pregnancy to term after 12 months of trying. Any one of a number of hormonal or anatomical problems in either the male or female partner (or both) can cause infertility. In a fairly large number of couples—about 20 percent—there’s no identifiable cause (i.e., unexplained infertility).
According to a recent study, many of these women may actually have celiac disease. When researchers at the Celiac Disease Center at Columbia University screened 188 women with infertility for celiac, there was no higher risk of the autoimmune disorder until they narrowed it to just those with unexplained infertility. Of that group, almost 6 percent had celiac disease—a rate nearly six times higher than expected—raising the possibility that “celiac is an important association of unexplained infertility,” the researchers wrote."

So many women are suffering unawares, but there is hope for better diagnosis process. At least one IVF facility in the West now recommends all beginner IVF patients to try a 6 month GF diet before beginning other fertility treatment.

http://www.livingwithout.com/issues/4_24/why-cant-we-have-a-baby-3184-1.html?pg=1

Dental Complications of CD

Bad Baby Teeth?  Could be CD

As most of you know, I have so many close family with this disease that they are my lab rats.  We have been the source of celiac studies and the family are my go-to-kids for my own celiac surveys on more than one occasion.  So in this situation, proof positive is my dear sisters five children who were all born with defective enamel--my emperical evidence of this situation.  By about two years old, the children have to be refit with new teeth.  Thank goodness for the science of dentistry.

http://www.theglobeandmail.com/life/health-and-fitness/health/conditions/tooth-damage-may-be-a-sign-of-celiac-disease-dentists-told/article12346685/?cmpid=rss1

first posted 8-24-09   New information:  Tooth Damage May Be A Sign of CD

Dental problems increase with CD - August 2009 article. Image complements of the AMA

http://www.ncbi.nlm.nih.gov/pubmed/19687752?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Celiac Disease v Gluten-Sensitivity

Celiac disease: Celiac disease is a medically diagnosed autoimmune digestive disease, which interferes with absorption of nutrients from food and can lead to malnourishment and other conditions. Even a very small amount of gluten contamination can cause an autoimmune reaction including both digestive and non-digestive symptoms, typically appearing a few hours or days after gluten has been ingested. 

Gluten sensitivity: According to the National Foundation for Celiac Awareness (NFCA), the condition affects 18 million Americans and falls within the spectrum of gluten-related disorders. Symptoms of gluten sensitivity often overlap with celiac disease. Unlike celiac disease, gluten sensitivity is not an autoimmune disease and does not result in the same type of intestinal damage.

Symptomless Gluten Sensitivity

A newbie?  I really found this doctor's opinions to be very interesting .  Dr. Clark on YouTube.

Celiac Disease and Sorbitol H2 Breath Tests

Another of my dear friends has been diagnosed gluten sensitive with the "breath test".  I know that this is new and has previously only been used to gauge gut and villi health in the recovery part of the disease, but a doctor in our town is using it to diagnose patients.   And that's perfectly okay with me.

I find no reason to disparage this practice as I am, as you all know, an advocate of the gold standard being your own health, not the note from the doctor giving you permission to finally be sick.

IF YOU TRY THE DIET AND YOU FEEL BETTER, KEEP DOING WHAT YOU ARE DOING!!!

Here is the pubmed link to the expert's opinions.

And Good Luck

http://www.ncbi.nlm.nih.gov/pubmed/11686216

Here is the link to the study about finding celiac disease amidst your relatives by using the breath test.   Can I just say, that if this had been possible, my nieces and nephews--in fact my entire family who all submitted to the study requiring blood work--would probably like me better.

http://www.ncbi.nlm.nih.gov/pubmed/12889558

GF Grief Cycles - Anger

first posted 2-8-08 

"Ring, ring,"

I have a retro ring tone programmed into my cell.  The instant I hear that ring, I’m flung back into the past, I'm six years old and so excited because the call causing Grammy's big black telephone to ring, might be for me. Whee!

Today my telephone rings and the caller id. reads Mandy.[1] Telephone calls from Mandy, the Mom, are delightful, because she loves this disease. NOT!  

However, the diagnosis of celiac disease saved her little three-year old tornado from the very precipice of doom. Before her diagnosis, each day the child careened through life, with no regard for the detritus left in her wake. 

Mommy Mandy had tried to tame the tornado with every technique short of the lasso of Pecos Bill. And now, the diagnosis of celiac disease is the rope she clings to.

DX stories: Mandy’s daughter, Twila,[2] was diagnosed at three. She showed signs of failure to thrive, underdevelopment in motor skills on top of the normal hedonistic tendencies of a three-year old. (She was a terror.) Finally after minor tummy troubles, Mandy forced her pediatrician to order blood tests and voila, celiac disease.

Mandy’s grief adjustment was daunting and her learning curve steep—as she learned, assimilated and incorporated all of the information in a very short period of time. I was so proud of her as she remained humble and teachable—yet dubious and witty, amid the trauma of grief. 

She became ubber-enthusiastic when she saw the steep improvement shown by her daughter. She had the added benefit of past journal entries as a comparative. This is vital. Recalling how bad--how desperately bad it was--helps many of us press on.

Anyway back to the telephone call. I’m expecting some short question, “I’m standing in the supermarket, can she have…” Instead I hear Mandy’s short, curt pronouncement, “I’m here playing miniature golf with my in-laws. The doctor just called and I’m positive for celiac disease. I’ll call later, but I’m very angry.” Click.

My heart sinks and I tear up with the news. Then I get angry too and practice my transference. Isn’t it awful how some physicians have honed their bedside manner? Most celiacs are afforded the same treatment as patients with terminal diagnoses. 

“You have celiac disease. We can’t do anything for you, go away.”

Anger is a very real part of the celiac grief recovery process. So, embrace it, love it, express it and expel it. But do try to have your most vituperative rants in private, so you don’t get the comment that I hear most often from my friends, “Well, go on, don’t hold back. Tell us how you really feel!”

I'd make an effort to aim my anger at a constructive target, in advocacy, and on that rock hard brick of a celiac loaf that is your first attempt at baking gluten-free food!

Then move on. There is more to the grief process, and if I have it right, you’ll be back here soon, revisiting it anyway. YAY!

---

[1] Names are changed to protect people who like some anonymity after I’ve written about them.[2] Changed to Twila the Tornado – aren't kids great?

Silent Celiac Disease

No symptoms--no celiac disease right? This is as critical information now as when first published two and a half years ago. So here it is again. Thanks my people for reminding me!

How can someone have celiac disease and show no symptoms???? NO WAY!!!

First published 9-25-09

Here is a direct quote from American Physician Magazine:

"Gluten-sensitive enteropathy commonly manifests as "silent" celiac disease (i.e., minimal or no symptoms). Serologic tests for antibodies against endomysium, transglutaminase, and gliadin identify most patients with the disease.

Serologic (blood) testing should be considered in patients who are at increased genetic risk for gluten-sensitive enteropathy (i.e., family history of celiac disease or personal history of type I diabetes) and in patients who have chronic diarrhea, unexplained anemia, chronic fatigue, or unexplained weight loss."

Why do we care to treat celiac disease without symptoms? Why go on this restrictive diet if we are not sick?

Early diagnosis and management are important to forestall serious consequences of malabsorption, such as osteoporosis and pernicious anemia. (Am Fam Physician 2002;66:2259-66,2269-70. Copyright© 2002 American Academy of Family Physicians.

What does it mean when my biopsy is negative but my blood work is positive?

As best I can tell it's called latent celiac disease. Here are some articles to review.

http://www.medicinenet.com/celiac_disease/page4.htm#toci

http://www.celiac.com/articles/21482/1/Latent-Celiac-Disease-Afflicts-Many-Who-Tolerate-Gluten/Page1.html

Aspergers & Celiac Disease

ADHD, Aspergers and Gluten Intolerance?

Click for a great article on diagnosis of childhood mental disorders and CD.

As a child, College Guy had a myriad of interesting attributes that I thought all stemmed from being born a boy.

Upon birthing my second son, I finally recognized that it wasn't ALL BOYS who acted like he did; He was Uni-Que--pronounced just like that! Since then, I have since discovered the connection between malnutrition and it's influence in cognitive and social development.

I recall our first years of intimate communication--in a language that only Mom could understand. And until the speech therapist intervened, he and I lived in our own little talking world. For him, speech was not delimiting-- his excited, enthusiastic personality burst every boundary.

He fit most of the symptoms of aspergers, but we didn't discover that until high school, so the label didn't limit him. Early on, he was summed up by educators (at school and church) to be-- in one word: Challenging.

As a child he was always learning, searching, thinking outside the box--and then outside the house, outside the yard and down the street. His wandering mind disappeared around the corners, searching and investigating, without any fear or worry about consequence.

Now as a college guy, he still lives outside the box, sleeps outside the dorms, at the cousins' house and who know where else this week (his phone is on the fritz).

And he's off to Alaska to serve a church mission. He had to pass extra tests and the 20 page questionnaire that I completed that had 200 questions verging from serious to absurd.

"Can he brush his teeth?" Yeah, but does he? I don't know. I did my best, but what can you expect--sometimes Mommy calls the dorm and he laughs at the question, thinks I'm not seriously inquiring! "Well, ARE YOU brushing your teeth?"

What More CAN A MOM DO?

Yeah, he has become fully functional, completely capable, diligent and dutiful and I'm sure going to be a positive missionary in every way, but I did wonder at one point whether this one would even be able to clean a bathroom.

Now he can, the question is WILL HE?

I think the key is that because I didn't know anything was different about him, he was treated with high expectations as if there he was abysmally normal.

I hope society's expectations continue to also be that high.

Reality Bite: And if you get the chance before your delightfully challenging child is grown, watch the movie "Temple Grandin". That woman is marvelously inspiring.

Schizophrenia and Gluten

More proof from BBC study of schizophrenia triggered by gluten.

http://news.bbc.co.uk/2/hi/uk_news/scotland/highlands_and_islands/8009930.stm

Thanks Lisa for the link.

Also, here is the older study link on pubmed for your physicians.

J Int Med 1997; 242: 421-423 This is the study of an individual who had been diagnosed with schizophrenia--whose symptoms were improved with a GFD within a few days. Within 6 mo SPECT scan was repeated and showed complete normalization of brain perfusion.

Wall Street GF Article

The Feb 7 2012, Wall Street Journal article on Gluten Confusion promises to separate the Facts from the Buzz. It only serves to conflict and confuse me more.

It concludes that people who are only gluten sensitive and not celiac can eat small quantities of gluten occasionally without problems.

Um... in my discussions with people of the entire gluten spectrum my findings are that this disease is cumulative and persons who were once only sufferers of gluten sensitivities like DH are now full-blown celiacs with compounded symptoms. (my first cousin)

Individuals who tested negative for CD all their lives, (my kids) are now, as young adults suffering the full blown effects (perhaps worse for not being diagnosed and diet effected early).

Individuals who have no symptoms (including the biopsy) but show up as positive for CD in their blood should go on the diet or risk acquiring other auto immune diseases like lupus and Crohn's (my two sisters).

I do agree with the last section who quotes Cynthia Kupper from GIG who seems to conclude that if the diet works, DO IT!

And lastly, doctors who presume to diagnose disease based on inaccurate disease indicators shouldn't be the least bit surprised when their disease is managed by the populace of sufferers outside of their control.

http://online.wsj.com/article/health_journal.html

New Celiac Diagnosis Criteria

WOOT! Finally a diagnosis that uses good response to a g-f diet as a criteria for diagnosis. Somebody woke up to the dawn of a new day!

University of Chicago

Every child with a family history of CD, Type I diabetes, short stature or Down syndrome should get a gene test. AMEN! I love those words. And we are on the right track.

Not zooming down it, but at least headed in the right direction!

http://www.cureceliacdisease.org/email-newsletter

http://www.cureceliacdisease.org/wp-content/uploads/2012/01/CdC_Newsletter_0112_v4-link.pdf

Articles for the New Year #1

The Liberated Kitchen (based in Portland Oregon) has just recently put out an interesting and informative (with many related links) 5-part series on Celiac. The five parts are:

Celiac Testing Myth #1 – No Symptoms = No Celiac
Celiac Testing Myth #2 – Go Gluten-Free First
Celiac Testing Myth #3 – Gluten-Free 4 Life = No Reason to Test
Celiac Testing Myth #4 – Doctor Knows Best
Celiac Testing Myth #5 – DNA = Proof

You can follow the entire thread by starting at:
http://tinyurl.com/7ueofom

No Celiac Disease in the Blood

"...the type of celiac disease that doesn't show up in bloodwork?" Many of us have experience with this, but too many doctors don't think it exists. Good to see it show up in print.

http://www.huntersvilleherald.com/sports/2011/11/03/battling-back/

A YEAR LATER... AM I BETTER?

First posted 05-25-05

I am feeling so much better! How long has this disease been developing? Anemia as a kid, allergies as a teen, but overall, I was a pretty healthy person. Then I had my last baby and like all new moms, I took the advice, "sleep when they do."

...and sleep when they don't. When they toddle and no longer take four naps daily, I find myself tipping over the couch to block a quick exit, switching on public TV and going about modifying the carpet print with my left cheek.

My acute exhaustion was first misdiagnosed as pernicious anemnia. My anemia had advanced unchecked because I took iron pills (for heaven sakes) that masked the symptoms.

I learned to play a complicated version of Nap Attack. I napped while cleaning - in closets with the vacuum, while tucking in sheets between the bed and wall--wherever the attack struck, I could nap. I should have known there was a problem when I found myself curled up in the linen closet--asleep.

I could nod off between traffic lights. "Kids, wake me when it turns green!" I would volunteer at school only if they promised a tablecloth with a higher thread count than my best sheets.

I was tired. Along with all exhaustion, I developed a myriad of other diseases--or rather the symptoms of those diseases:

I was a woman turning 40 ("Therefore," the doctor says, "these things happen when you reach forty"). When the doc is stumped, it's always all about age. I had liver problems, kidney pain, pica, reflux, restless leg, joint pain, IBS, migranes, alopecia, heart fibrillation, exhaustion, neuralgia, anemia, and worst of all bifocals! I now have none of these! Not even glasses!

I spent 2005 straightening my learning curve of celiac disease and still every day of that first year I wondered if the curve was a full circle and that there was no reprieve.

But, as I look back, I promise you there is. Seven years later, it's been a long journey back to life, but every day I'm the living proof.

Why GF without a definitive Diagnosis?

Why are so many people trying the gluten-free diet without a diagnosis? This article is very helpful to explain why the lack of accurate tests still indicate that a diet challenge should be attempted.

What if it works?

http://glutenfreeworks.com/blog/2010/12/28/everyone-on-a-gluten-free-diet-2/#more-2839

This article on celiac com talks about a study showing that non-celiac gluten intolerance is real.

http://www.celiac.com/articles/22430/1/Study-Shows-Gluten-Intolerance-Without-Celiac-Disease/Page1.html

Thread topic:
http://www.celiac.com/gluten-free/topic/77613-study-shows-gluten-intolerance-without-celiac-disease-celiaccom/page__gopid__675314#entry675314

ADHD Awesome, Diverse, Huggable, Dynamic Kids

It’s College Guy off to Alaska on his church mission that is the topic of the posts this week. I'm sorting and packing, both socks and memories. I blogged my angst when the first birdy flit the nest and I'm feeling similarly as this one flies off.

Of my three children, number two (Mission-bound Guy - aka College guy) was the toughest of the three to raise. (Knock on wood as we're only three-quarters begun with #3).

I believe it was in part because he wasn't diagnosed with celiac disease until he was fifteen. I think now that some of his challenges could have been ameliorated with diet. (Google ADHD and celiac disease--1.6 million links can't be all wrong?)

So this week, my topic--interspersed between recipes--will caroon through the years of discovery, and the attributes and diagnosis of celiac disease in children.

Reality Bite: Finding comfort in "To every thing there is a season and a time to every purpose under the heaven."

Venus Has Sjogrens... Hmmm?

As you all know, Sjogrens is yet another related auto immune disease. Here is a follow up article to the information coming out about Venus Williams.

Again, struggling to answer the age old question, why so much auto-immune disease?

http://www.healthymagination.com/blog/whats-triggering-the-global-autoimmune-disease-epidemic/