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Anyone Been Diagnosed Whilst Pregnant?

3 posts in this topic

Hi Ladies

I've suffered from what I thought was IBS for about 7years and always jumped up and down to see a specialist with no result. However now that I am pregnant my symptoms are simply unbearable, what seems like every meal I was doubled over in agony - even throughout the night with severe abdominal pain and "toilet troubles" whether it be loose or constipation.

So after weeks of this, I was given a blood test for Coeliac which came back positive, I now await an Endoscopy (Camera into stomach) to confirm although I'm told the bloods are about 98% accurate.

Silly thing to do researching on the internet as the doctors dont seem too bothered to get me in (I had to fight for several weeks and hours on the phone to get my appt as they "are busy" even though they acknowledge im URGENT - but the good old internet tells me that with me continuing to eat gluten as the doctors have told me to do could be harmful to baby and result in low birth weight etc etc.

I'm just so worried and still in pain everyday and since I'm now 24weeks and just getting Endoscopy next Wed - I feel that I am at a loss as to how to make sure my baby is healthy!

I wondered if any other mums had been through Coeliac whilst pregnant or even closer to my situation been diagnosed whilst pregnant as most forums I am reading are already eating gluten free by the time they have fell pregnant!

Thanks in advance!



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Welcome Jo!

First - congratulations on your pregnancy.

Second - don't eat more gluten than you need to - a slice or two of glutenous bread is sufficient. I may get slammed for suggesting this, but since you've already tested positive and are pregnant - if it were me - I would remove gluten now. Yes, the endoscopy is most accurate while still ingesting gluten - so if you are able to eat a slice of toast or two for the next few days do so -maybe at night.

Also make sure you had a full celiac panel. If you are unsure request a written or electronic copy of your results from your doctor. You can post them here if you are unsure of what was/needs to be done.

Nutrient testing is also very important - you may need more supplemtation than prenatal vitamins while you are healing and justating at the same time.

Hang in there - it really is very good that you found out now and will soon be able to give up gluten to become a strong healthy Mom :)


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I was diagnosed while pregnant, only I found out I was pregnant the next day. I still started the gluten-free diet and could see a vast improvement in a matter of days.


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    • 60% of celiacs with dh test negative on the celiac blood work. Fact. Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease.
    • Person above me is correct. You need a skin biopsy, and it must be performed correctly. I never had a positive blood test but my biopsy came up positive for DH. Going gluten-free for a month usually won't  clear up DH. It commonly takes ~6 months, and this only on a very strict gluten-free diet. Any exposure to even small amounts of gluten (through cross-contamination, etc) can lead to flareups.     
    • Has your derm ever done a dh biopsy? BTW, it's not taken ON a lesion, it's taken on clear skin adjacent to a fresh lesion. I bet your derm doesn't know that. I bet if you ask for a dh biopsy he will take it right on top of a lesion. Ditch him & get a derm who knows about celiac & dh & how to properly take a biopsy for it. The antibodies can stay under the skin for years. The derm is wrong.  Please describe how the rash acts & what it feels like.
    • Yes, there are other grains that have gluten but they don't have the TYPE of gluten that affects celiacs. Celaics can not have the gluten in wheat, barley, & rye. Corn has gluten but it is not the kind of gluten we react to. I actually use corn gluten in my garden as it prevents weed seeds from sprouting. LOL! Hey, it works great! Read these: Gluten is the name for the protein in grains. All grains contain protein that is theoretically gluten but people with celiac disease and most other gluten allergies only react to the form of gluten found in wheat (including spelt, kamut, triticale and all varieties of wheat), barley, and rye. From:   I've run across another gluten urban legend that needs to be dispelled: the idea that people with celiac disease and non-celiac gluten sensitivity actually react to gluten in all grains, not just wheat, barley, rye and sometimes oats. This just isn't true, despite what you might have heard or read. People who react to the gluten protein found in wheat, barley and rye don't automatically need to avoid rice, corn, millet, sorghum and other grains. From:   There are some unsavory sites out there in internet land that will tell you celiacs cross react to all grains. They generally have something to sell, a book, a video, some vitamins or other things. They use scare tactics to sell what they are selling. These claims simply are not true. If they were, then all the people on this site who have gotten well while not eating wheat, barley & rye but continuing to eat rice, quinoa, corn & so forth would not have gotten well; they would be dead by now & there would be no "old timers" on this site because they would have eventually died from eating grains other than wheat, barley & rye. Celiacs can develop sensitivities to other foods, even foods like cabbage or lettuce or potatoes or even rice or maybe only brown rice but that does not mean they are reacting b/c of gluten in those things. You may be doing great since eliminating rice from your diet and that is wonderful that you figured out that it affects you but that does not mean the rice contains the kind of protein that celiacs can not tolerate.  
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