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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How My Baby Saved Me: My Post-Partum Celiac Onset
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4 posts in this topic

People sometimes say: you used to eat gluten and you were fine before. How did you suddenly develop gluten intolerance?

 

The answer lies in the story of how my baby's food allergies saved me:

 

I had experienced bloating, and intestinal pain for years, but it all became more severe in 2013, post partum. For the previous decade or so, I had consulted GP doctors about vague intestinal abdominal issues and episodes of low iron, B-12 and folic acid deficiency. Because I complained of "something going on" in my abdomen, the doc ordered an ultrasound of my ovaries and found nothing.

 

On other occasions, I was told I might have irritable bowel and that it can bother some people more than others. As for the low iron, I was told it is common (I'm sure that's true!), so not to worry.

 

After I had my second child by c-section, I had worsening symptoms and daily intestinal inflammation, visible contractions, swelling, bubbles moving through and visibly rising up through my abdomen. You could see the tunnel lift! I thought the surgeon had put my intestines in too high after my c-section, it was so bad. I started getting more frequent migraines with auras and hypoglycemic days. I started to look grey skinned. I had an itch all the time and canker sores. My post partum weight dropped quickly and then I was lighter than my athletic "race weight" whilst eating piles of food. People asked "How I lost my baby fat so fast".

 

My stools started turning into black, sticky, pasty cow patties that I could not flush. I had to wipe them down. They stank. My belly kept blowing up like a balloon after supper, like there was a great fermentation kit inside me. I was tired. I was sick. I had infections. I started bruising easily. I had flu like symptoms and deep fatigue all the time. I am an athlete, so I was exercising and was fit, but I felt totally unhealthy. There is a difference, and I could feel it.

 

Then I started walking into doors and loosing my balance. I couldn't think clearly and close my mental circuit. I put my keys in my daughters loot bag. I pressed the brake pedal and wondered why my car wouldn't go. I felt like I was suddenly getting Alzheimer's.

 

My swim coach told me I looked awful. I knew he was right. I was in the midst of planning to go to my doctor, but I was busy with my baby and five year old. I was also dealing with my baby's food allergies: protein enteropathy / IgG allergies and FPIES .... see www.IAFFPIE.org . And, ironically, this is what saved me. Because my 5 month old was reacting to my breastmilk and he had enteropathy and allergies to all cereals and formulas, as well as Food Protein Induced Enterocolitis Syndrome to rice, I changed my diet. I took out  all gluten from my diet so my nursing baby would no longer be in pain. Bingo. We both got better. My abdomen stopped rising and giving me pain. My stools gradually improved over a few weeks until they were normal again. The other "weird" symptoms I had been having, lifted. Even the edema in my legs dropped, and I hadn't even known that was not normal.

 

I learned that pregnancy can be the environmental trigger for the onset of active or "more" active celiac disease. I went to my doctor and did the blood tests. Unfortunately, by this time, I was gluten free for a couple of months and they came back normal. Since this time, I have felt frustrated by the lack of diagnosis. I feel I lack the leverage for my children to be assessed for celiac and for me to be screened for other things. And it is hard to navigate the world without being seen as following a gluten free fad.

 

But I'm sure I have it. Looking back some years... I did not menstruate until I was 16, and the enamel on two of my teeth never formed. I was always told it was from tetracycline. Now I'm not so sure. Since my twenties, I've been asked by dentists if I'm a smoker due to my yellowing teeth. Despite my healthy lifestyle, my enamel has always been poor, and stained dreadfully. Not to mention the veneers hiding my unformed teeth.

 

And then I've had the on off cycles of intestinal flare ups and pain for 15 years or so. And the vitamin deficiencies. Now, when I am glutened, after nearly a year gluten free, I get migraines, diarrhea, itches, canker sores, and fatigue and aches.

 

I think I've just about convinced myself I have celiac disease.

 

The question becomes, how do I proceed for my children and potentially my own diagnoses. My baby, now 16 months is still gluten free, but he has numerous food issues, and I have no idea how, and when I will assess him properly. My daugher shows subtle signs... they could mean nothing, but I fear they may be the first clues and I'm not sure when to tackle it. I don't want to loose that precious chance to get her tested at the wrong time, in case it comes back as a false negative and I loose that leverage for later.

 

My daughter:

Daughter with alternating constipation with pale, sometimes white, cream or mottled, floating bits, bulky stools, steatorrhea

Frequent bloating

Abdominal pain around intestines, rather than stomach

Itchy skin

Irritability greater with gluten

Teeth: decalcification and grooves and concave shape, possible sinds, dentist noted shape

Frequent pins and needles

FPIES to oats at 6 months. Outgrew by 3 or 4.

 

Thanks to any and all who ploughed through my story. I welcome your thoughts.

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I hear your frustration on not being able to get a diagnosis! I have a similar story, my pregnancy brought the gluten issues to the forefront through a serious systemic skin rash. Through an elimination diet, I figured out that when I avoided wheat, the rash was much better, but when I added wheat back in,within 3-4 days the rash was coming back in the same spot even!

 

Eventually I did want to get tested for celiac disease and I went on a gluten trial. After 10 days on gluten full time, fatigue, swelling, feeling miserable, and chronic headaches, I had a TIA (ministroke) from the headaches and wound up in the ER. At my follow up with my doctor, he concluded that the gluten was the cause of the TIA and told me to "just stay away from the gluten."

 

That was 4 years ago and I immediately went gluten-free from that day on and have never had any more of those frightening types of symptoms since.

 

So, in my case, I won't be able to get a diagnosis until medical science progresses, because eating gluten for 3 months would likely kill me.

 

So I can empathize at the lack of options for those of us who arrived at our path a different way. 

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Hi Ruth,

My goodness, I'm so sorry to hear what a terrifying and dangerous experience you had. Thank you for sharing it with me. I had indeed been contemplating a gluten challenge when I am no longer nursing, however I doubted I could handle the side effects. Having read your experience, I almost certainly will not. That was indeed sobering. take care of yourself, and let's hope for better testing options for others in the future!

p.s. I wonder if the severity of symptoms that you seem to have developed and I think I did too, has anything to do with an acute onset post partum.

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So glad you found out.  My story is similar.  I had bloating and swelling, I thought this was normal for 30+ years.  I lost the enamel off of my teeth when I was 17.  IT is very good to know to need to avoid gluten when you need to.  What a blessing the baby turned out to be.  Wishing your family many more blessings as you recover.

 

D

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