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Do I Really Have Celiacs?
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7 posts in this topic

I'm not getting enough answers from my doctor, so I was hoping for some help here. Thank you in advance for reading.

So to start, I've been having pretty regular gas and bloating for almost 2 months now. My stomach gets really large and looks like I'm pregnant and causes me a lot of pain. It seemed like it was out of the blue when I had my first stomach/intestine ache. I took 2 tablets of TUMS and thought that would cure it, I usually don't have any indigestion problems so I thought it would clear right away. I took 2 more tablets of TUMS and still, I had a burning, indigestion-like feeling. I thought it just to be some gas and that going to the bathroom would clear it up. A few days later, I had the same feeling, gas and bloating. I have never had any issue with gas in my life! I've been to Kaiser many times now and had a variety of tests. My first doctor just wanted to diagnose me with IBS. I took some knock off Pepcid (Peptid?) OTC for a week but I still had the same symptoms. I had blood in my stool at least once that I've encountered but for the most part no diarrhea or constipation. My second doctor thought I may have Celiacs and I had the blood test TISSUE TRANSGLUTAMINASE which I will post next:

TISSUE TRANSGLUTAMINASE IgG (my test results)1.78 (normal range) = < 0.90

Tissue transglutaminase IgA (my test results)0.38 (normal range) = < 0.90

This doctor at least got back to me with an analysis and thought it might suggest that I have celiacs. I have not been eating gluten, or much of anything really. I haven't felt hungry for over a week, mostly because I get lots of gas soon after eating. I vomited today after a bowl of fruit and a few days ago after some ice cream and a frozen dinner, both of which I checked for gluten or any gluten additives. It just doesn't make sense. I'm hoping to get a biopsy to know if I have it for sure, but getting an appointment has been troublesome. I'm 22 and been eating bread and yummy cakes and cookies all my life. I'm really depressed thinking I cannot eat the same way anymore but I'm trying to be gluten free since my stomach just hasn't been the same for 2 months. This is really ruining my life and is causing me a ton of stress because I have to go back to college soon and I'll have to deal with this very limiting diet. I feel sick nearly every day with stomach pains and get only minimal relief trying to push out the excess gas on the toilet. Do my test results really indicate I have the disease? I realize the number is higher than the normal, but am I highly intolerant or just mildly? There is no one in my family that I know who has this. I'm just very wary because there are so many things that gas/bloating can be and I don't want it to be anything more serious. My urinalysis showed a high level of protein (70mg/Dl) and moderate amount of LEUKOCYTE ESTERASE (aka white blood cells). I don't know if these are also a result of my possible celiacs disease, or if it indicates something different. My blood also had a higher level of white blood cells (13% Eosinophils). These tests were never addressed by my first doctor and I'm thinking I may have parasites. According to an article I read, Giardia, a parasite in the small intestine, can cause a wheat allergy.

Any insight?

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First, you likely DO have celiac disease. A few other things can elevate TTG though. Your doctor should do additional bloodwork- a full celiac panel that includes Anti-Gliadin and Endomysial antibodies. Giardia will not cause an elevated TTG- that is a sign of auto-immune activity, and 90% specific for Celiac Disease.

It is critical that continue eating gluten right now though. If you stop, your body will stop making antibodies and your tests will show a false negative.

You will likely be referred for a biopsy. You need to continue eating gluten until after the biopsy. The biopsy looks for damaged villi, which will heal quickly on a gluten free diet. If you are not eating gluten, then again, you may get a false negative biopsy.

It is very likely, given your symptoms and the positive TTG that you have celiac disease. You need to start thinking of yourself as one and do all you can to educate yourself. It is difficult at first to give up the yummy foods we have grown to love. No one will argue that. But there is an entire world of delicious foods available that you CAN have. In the beginning, I thought gluten-free cakes and cookies all tasted like sand, and most store bought ones do. But I have learned to bake fantastic gluten-free ones that no one would ever know were not "normal" it just takes practice.

Having Celiac Disease is not the end of the world. For me, it was the beginning of a whole new life after feeling sick and tired for 30 years. I am grateful every day to finally be diagnosed. Feeling well feels wonderful.

Please take some time to read these boards. You will learn more here than what most drs know about Celiac. And welcome.

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You might have celiac. It doesn't sound like the doctor gave you the full celiac disease blood antibody panel.

They usually test for total IgA also, as some people don't really make IgA cells.

Since you are already gluten-free for a couple months though, it won't do any good to go for more tests. Except may be total IgA to know if you make it or not.

If you want to get test for celiac antibodies, you need to eat gluten for 2 or 3 months before testing. I think it is simpler to just go gluten-free for the same 2 or 3 months and see if you feel better. But some people do want a formal diagnosis.

http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp

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gluten-free in DC, I think you misread the OP's post. I think she has only been gluten-free a few days it sounds like. Am I mistaken?

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gluten-free in DC, I think you misread the OP's post. I think she has only been gluten-free a few days it sounds like. Am I mistaken?

Yes, for a few days as best as I can. My mom accidently bought some ice cream that had gluten in it which I ate. So I feel that I haven't been perfect. We're still adjusting to checking every little thing that goes into my mouth. Heh. I'm still not feeling well, I don't know how long it takes to recover from accidently ingesting gluten.

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Well that is good. Just make sure you start eating it again right away until all of the tests are done. And then hopefully going gluten-free will have you feeling better soon!

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Right you are Mitzi, I misread indeed. Thanks for catching that! :) I agree, getting back on gluten now is the thing to do so testing can be done. It's much easier to do the testing before going gluten-free. A 3 month gluten challenge can be pretty rough to do later on.

Ker0Pi,

Recovery and healing from damage is unique to each individual. Some of us get better very quickly, other people it takes longer. Getting better can take weeks, months or years.

Most of the time though a glutening after you are on the gluten-free diet shouldn't affect you for more than a few weeks. But it varies a lot by person, it could be more time. After going gluten-free people tend to become more sensitive to gluten or maybe they just notice the effects more. So minor amounts of gluten from cross-contamination can make us sick. That's called being glutened.

Some schools have plans in place to help students with food allergies, so you might want to check in on that.

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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