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Oddball?
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Hey everyone, I'm new. Quick background: 23 years old, female, newly diagnosed celiac (October of this year), been suffering off and on since puberty hit but symptoms have gotten considerably worse in the past year. I was originally diagnosed with IBS but after keeping a food journal I found that my worst symptoms (digestive issues) were connected to enriched wheat flour. So I went to the doctor and had a celiac panel done.

I kind of feel like an oddball because there are certain gluten foods that I can eat and the worst symptoms I get are fatigue and maybe a little bloating, but there are other foods that send me into 10-scale pain. I'm trying to be as gluten-free as possible, but it's really hard to let go of some foods, and even harder to eat out and not be cross-contaminated. I was prescribed Bentyl for intestinal spasms when my doctor thought I had IBS but it doesn't help because my episodes are relatively short (1.5-2 hours). Are there any medications for celiac-related pain or is the only option to go completely gluten-free?

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i can say it once, but others will undoubtedly echo it several times: the ONLY option is to go completely gluten free. I know that it's difficult at first to adapt to a new diet, but it is absolutely essential that you understand that you are doing grave damage to your body when you eat even the smallest amount of gluten. You're still young, so you may have damaged your intestinal lining very little; however, if you continue to eat gluten, you could end up with some horrendous disabilities. For one thing, you could develop other auto-immune diseases such as Hashimoto's Thyroiditis, lupus, gluten ataxia, Sjogren's, etc, or develop neurological difficulties such as migraines, epilepsy, depression, etc. Having celiac means you do NOT have the option to eat or not eat gluten--you must avoid it completely. That said, you will probably not be much older when treatments become available that will allow you to eat gluten for short periods of time. There is also a vaccine that is expected to come on the market within the next five years. In the interim, please take good care of your health and adopt a strict, gluten-free diet. Sometimes when you damage a part of your small intestine, it does NOT repair itself....so you are left with a lifelong disability.

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but symptoms have gotten considerably worse in the past year

there are certain gluten foods that I can eat and the worst symptoms I get are fatigue and maybe a little bloating

Exactly what Rosetapper said. There is no safe amount of gluten for someone with Celiac Disease.

I've selected two key thoughts from your post. Your symptoms have gotten worse as time passes.

The symptoms you list as minor will get worse as well until the fatigue is debilitating and the bloating is severe -- it is possible you will develop even more symptoms if you do not remove gluten. The good news is repairing your body and living a healthful life is within your reach.

None of this is said to scare you - it is what it is. Celiac Disease gets worse with any amount of gluten. Even if you are lucky enough to not have symptoms worsen, your small intestine is being damaged each time you eat gluten.

Welcome to the forum - feel free to ask lots of questions and read as much as you can - it really does help a very difficult transition happen a bit more quickly. No one will tell you it is easy, but many will tell you it is worth it.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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