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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 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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    • Sorry Doit, Ok, I think I see what you are talking about.  The serum IgA test?  The serum IgA is to verify if your body does make IgA antibodies.  Not all of us make that particular antibody type.  you do make IgA antibodies though, and your reading is fairly high.  the way I understand it, the serum IgA is not specific to celiac disease.  It does indicate a level of antibody activity though.  So perhaps you are fighting an infection or something?  Or it is celiac and for some reason your blood levels of antibodies are not high enough to detect right now. The below info on serum IgA is from Quest Labs. ******************************************************************** Test Highlight IgA, Serum    Clinical Use Diagnose IgA deficiencies Determine etiology of recurrent infections Diagnose infection Diagnose inflammation Diagnose IgA monoclonal gammopathy Clinical Background IgA is the first line of defense for the majority of infections at mucosal surfaces and consists of 2 subclasses. IgA1 is the dominant subclass, accounting for 80% to 90% of total serum IgA and greater than half of the IgA in secretions such as milk, saliva, and tears. IgA2, on the other hand, is more concentrated in secretions than in blood. IgA2 is more resistant to proteolytic cleavage and may be more functionally active than IgA1. IgA deficiency is the most prevalent isotype deficiency, occurring in 1/400 to 1/700 individuals. Many patients with IgA deficiency are asymptomatic, while others may develop allergic disease, repeated sinopulmonary or gastroenterologic infections, and/or autoimmune disease. Individuals with complete absence of IgA (<5 mg/dL) may develop autoantibodies to IgA after blood or intravenous immunoglobulin infusions and may experience anaphylaxis on repeat exposure. Elevated serum IgA levels are associated with infection, inflammation, or IgA monoclonal gammopathy. Method In this nephelometric method, anti-human IgA binds to IgA in the patient sample, forming an insoluble complex. The amount of light scattered by this insoluble complex is proportional to the concentration of IgA present in the sample.   ********************************************************************
    • Thanks for yoUr response GFinDC. For what it's worth,  I've eaten gluten daily for at a minimum of 10 weeks now. I have to taste at work, and initiallyni noticed no ill effect until after I'd been consuming it regularly over a period of time. Shortly before I initially went gluten free, I was suffering from unexplainable stomach cramping and issues that did go away when I quit gluten. It didn't come back until just the past couple of weeks though and now I'm remembering how painful, uncomfortable, and smelly the whole situation was 😂    Can you explain what the reflex test (the one I tested above range in) is? 
    • Hi, just looking for some advice as I'm still learning. I'm looking to go to Kenya next week and I'm quite stressed about the journey, I'm not too bothered about while I'm there as I should mostly be able to eat fresh fruit, vegetables and meat. What's the deal with chips (fries) in fast food places and restaurants, should they always be avoided? And how about rice? I've seen packets before that say may contain gluten. Thanks
    • Update! Had my appointment today and the doctor said she was going to order a full celiac panel without me even having to request it! I was overall impressed with how well my doctor handled this and listened to my concerns rather than writing them off like some people's doctors have.
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