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Undiagnosed Celiac During Pregnancy


djk40

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djk40 Newbie

When I was pregnant with my second daughter, I had horrible cramps during the first 20 months, then during the second half, I was extremely fatigued and had very soft stools (like soft serve icecream. I kept insisting something was very wrong with me, but the doctors couldn't figure it out. Then my daughter was born with mild CP ( the brain doesn't form completely tipically due to lack of oxygen at birth, but there are other causes)has anyone ever experienced this? I see alot of posts from people who already knew they had celiac during pregnancy. I'm just thinking that if the doctors were better informed this could have been avoided.


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jebby Enthusiast

I am very sorry about your daughter's diagnosis of CP. I was undiagnosed during all 3 of my pregnancies as well, and I have researched this topic extensively (the effects of undiagnosed celiac disease on the developing fetus). There is no known link between maternal celiac disease and poor placental blood flow. Celiac disease does effect fertility and may lead to poor growth in utero due to poor maternal nutrition, but that is all that is currently known. There are some pilot studies in which all pregnant moms are being screened for celiac, so hopefully there will be more information available in the future.

  • 5 weeks later...
HaileyRay812 Rookie

I am so sorry you have dealt with this. I believe I had undiagnosed celiac during both of my pregnancies. With my oldest, I had IUGR and she was born weighing 5 lbs 2 oz. At 39 weeks. I have heard IUGR is common with Celiac, and I don't know a lot about CP. I just hope drs start working harder to understand this, because that is their job. Most drs don't even seem to attempt to try and screen for the disease, which is a shame.

uote name='djk40' timestamp='1310333572' post='715530']

When I was pregnant with my second daughter, I had horrible cramps during the first 20 months, then during the second half, I was extremely fatigued and had very soft stools (like soft serve icecream. I kept insisting something was very wrong with me, but the doctors couldn't figure it out. Then my daughter was born with mild CP ( the brain doesn't form completely tipically due to lack of oxygen at birth, but there are other causes)has anyone ever experienced this? I see alot of posts from people who already knew they had celiac during pregnancy. I'm just thinking that if the doctors were better informed this could have been avoided.

cheryl50tx Newbie

Diagnosed Celiac disease in June, 2011. So many thoughts and emotions since diagnosed. Had been searching for help since severe anemic 10 yrs ago, dismissed as menstrual problem. Given meds. for depression never helped. Severe P.M.S dismissed and told to stay away from caffeine, salt, eat small meals. Severe hayfever in the fall, allergy tested, given allergy shots. Undigested food in B.M's even an allergy tablet, told diverticulitis, get colonoscopy. Visit with GI 5 yrs. ago wanted to do a colonoscopy, I declined. On third gynecologist, first offered hysterectomy or birth control pills, took BCP, second vaginal sonograms-cyst to small to cause pain, BCP for severe P.M.S. Third is also my new family doc internist/gynocology diagnosed Hypothyroid, high cholesterol, high triclycerides,low Vitamin D, depression. Armour thyroid helped the constant diarrhea but still complaining of the bloating, pain, plantar fasiatis and chronic depression. She referred me to GI, did the colonoscopy this time, ok, good for 10 yrs. She asked if anyone ever mentioned Celiac disease to me, never, not even her, she's the one I saw 5 yrs. previous. Ran celiac blood test, positive, I think my numbers are extremely high. She said no need for endoscopy, I definitely have celiac disease. I have had 5 children, premature baby at 26 weeks died next day, son severe dyslexia above average intellect, daughter 22, diagnosed malformed uterus, P.C.O.S, hypothyroid. Twins which were triplets, high risk, one has malformed uretha, A.D.D, L.D but both musically inclined.

So wondering if I've had this disease all my life? Is there any way to know? What are extremely high numbers on blood test? Read gold standard is to have endoscopy,should I? Anyone have some of the same issues? Sorry so long, I'm on an emotional roller coaster with all this. Thanks

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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