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Help Me, New At The Diet Again!


mckaylaslove

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mckaylaslove Newbie

Well what can i say, to make a long story short... i was completely normal until after i had my first child, them whammmmyyyy celiac hit me like a brick wall with the pain with foods i had always eaten. I was told when your body goes through childbirth or a surgery or illness allergies can come out. Well 2 years later i gradually went back to a normal diet and i was fine. I now have a 6 week old son, and right after i had him the same thing happened so here i am back on the diet. Please email me if you are in the same situation, and with any food ideas, websites or information... Just went to 4 grocery stores and no gluten free foods except the normal fruits, veggies, meats and dairy,,,,, help!!!


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Luisa2552 Apprentice

Hello and welcome. Were you diagnosed as having celiac disease? celiac disease never goes away. It is not an allergy. Maybe you have a wheat allergy which is very different than celiac disease. For a celiac, the diet is a life long thing. Symptoms or not if you have be diagnosed with celiac disease you are doing harm to yourself by eating gluten.

For me, meats, fruits and veggies were the easiest thing on my system when I first went gluten-free. Check the site index of this site and you will find a wealth of information you are looking for, including online gluten-free products. If there is a Whole Foods near you they carry many gluten-free products you may be looking for- pastas, bread mixes, etc.

mckaylaslove Newbie

Well im confusted!! My bloodwork said i have it, and my biopsy showed no damage! I went to a specialist in The University of Maryland. He said since the villi werent damaged i didnt have it. The bloodwork could show positive because its just a wheat allergy. Do you agree????

JNBunnie1 Community Regular
Well im confusted!! My bloodwork said i have it, and my biopsy showed no damage! I went to a specialist in The University of Maryland. He said since the villi werent damaged i didnt have it. The bloodwork could show positive because its just a wheat allergy. Do you agree????

No, if your bloodwork says you have Celiac, then you have Celiac, period. There are no false positives. Just because they happened to take samples from currently undamaged portions of your intestinal lining is no reason to discount your positive diagnosis. How long ago did you get this blood work?

Luisa2552 Apprentice
No, if your bloodwork says you have Celiac, then you have Celiac, period. There are no false positives. Just because they happened to take samples from currently undamaged portions of your intestinal lining is no reason to discount your positive diagnosis. How long ago did you get this blood work?

Yes that's true. What blood work was done? I've done lots of reading on this to get it clear in my head. We have 5 different immunoglobulins. IgA, IgD, IgE, IgG and IgM. IgA and IgG are specific to celiac disease and if these are elevated then you have celiac disease. IgE is the one that would be elevated if you have wheat allergy and is the test they run to check for food allergies. Many of those with celiac disease have gone through these 'allergy' tests and come back negative because celiac disease is not an allergy. People CAN have elevated IgE AND IgA, IgG but that is not too common.

Hope this makes sense. Do a wheat allergy search on this site and I'm sure you'll get more info.

Post your tests and results here and maybe we can help.

mommyagain Explorer

I had a similar situation with my symptoms. My severe symptoms (big D, abdominal pain, gas, bloating, etc) started shortly after I became pregnant with my 1st child. Symptoms continued through the pregnancy and for another almost 3 years while I was on Depo-Provera. My symptoms pretty much disappeared when I stopped the Depo. Over the last couple of years, my gi issues have been cyclic, worse at "that time of the month", but never debilitating. A little over 2 months ago, they came back full force. It turns out I'm 12 weeks pregnant, so my symptoms seem to be directly related to hormones.

I have never been tested for celiac, or a wheat allergy. I don't know which I have. But, I feel so good now (tons better than I did even when not symptomatic), I don't know if I'll ever go back to eating anything with gluten. Maybe after the baby is born and weaned, I'll consider doing a challenge, because my husband would like for me to have a formal diagnosis... but it will depend on how severe my symptoms are when I reintroduce it.

As far as shopping goes, a lot of grocery stores now put their gluten-free stuff in a "health-food" section. So, if you go to the pasta section, you won't see gluten-free pasta. But, if you go to the health food section, the gluten free pasta will be there... usually right next to the whole-wheat pasta (aack!). There are a couple of pasta brands that are pretty good, and a lot that are not. Use the experience of the people on this board, it's great for weeding out the "yucky stuff". If your local grocery does not carry the items you want, you may be able to get them to special order it, or start stocking it as a regular item. Make sure you ask for specific brands, or you may end up with the pasta that turns into gluey mash...

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      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
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      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
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      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
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