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Healing Now..but Why Do Non-gluten Foods Make Me React?!


utahlaura

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utahlaura Apprentice

I'm in the in the initial healing process, and I know it's supposed to be hard. Been diagnosed by endoscopy biopsy. Eating non- gluten of course, bit still have WAY too much trouble reacting to many non-gluten foods. Such as fruit or anything sour...any starchy veggies...milk products. And can I please ever make a non-gluten baked good that I don't react to??? Seems like anything too complicated or diverse sets me off even if the individual ingrediants usualy don't. What up with all this?? I'm so confused!!!


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lizard00 Enthusiast

I would first suggest doing away with dairy. When I eat gluten or dairy, I react to any and everything. Obviously I don't eat gluten, but for a while I was still feeling pretty gross. I'm either allergic to dairy or intolerant to casein, not sure which... anyway, if I eat dairy products, it's enough to cause a mild "burn" (that's what I call it- "the burn") in my GI tract and everything bothers me for a few days.

Have you been food allergy tested? If you repeatedly ingest a food that you're allergic to, even mildly, you are creating a reaction. If the reaction never stops, you will find that most things bother you.

curlyfries Contributor

I am 10 months gluten-free, and I still can not tolerate dairy or sugar. Some people also have issues with soy.

dilettantesteph Collaborator

Gluten gives my son GERD. He went on an acid free diet as well as the gluten free one initially. Basically no fat, citrus, chocolate, soda, berries, or tomatoes. Also until healed it is common to be lactose intolerant an not able to handle dairy. Lactase is produced in the intestine, and when damaged not much is produced. My son was able to eat dairy and acid foods after about 2 months gluten free. I am only now able to eat some milk products after almost a year. There is also the possibility that some of those non gluten foods might have some gluten contamination. I got glutened by gluten free baking soda, cocoa etc. that I had used before going gluten free. I must have done some double dipping after having the spoon in flour. That took awhile to figure out. Collanders, cutting boards, etc. can also be a source. It takes awhile to get used to this new diet.

ang1e0251 Contributor

You know, quite a lot of celiacs cannot tolerate dairy, some are able to return to it in time. But you must heal first. Probably a good idea to lay off dairy for now at least. I could not tolerate fruits until recently, gluten-free for a year. Better with them now. Be gentle with yourself. After all, it took a long time for you to get this sick, you are not going to heal overnight.

You'll figure out what bothers you over time. If you have a problem, leave for a time then try it again. If you react again then you know. It's all about feeling good, right?

CMCM Rising Star

When I did my testing for gluten, I also found out I was casein sensitive as well. I've been very resistant to eliminating dairy and in fact, I actually find it harder to avoid than gluten. When I first went gluten free, I was also dairy free for maybe 9 months. Then I added it back it in small amounts, and it didn't seem to bother me. I've found that if I don't have it every day, and if I keep it to small amounts, I can manage it. However, I've also realized I have to really limit sugar in all its forms, including fruit, also few to no starches, limited to no nightshades. Sad, but true. My system just does best without these things, unfortunately. :(

ShayFL Enthusiast

You might consider looking into the SCD diet for healing. It is naturally gluten-free and helps the gut heal and rebalance itself. Dairy is added in after healing has happened.

www.pecanbread.com

Many on this forum have benefited from it when gluten-free was not enough.


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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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