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New And Kinda Confused
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I went to the doctor yesterday because I just could not stand how thirsty I am all the time any more. The nurse checked my sugar first thing, and it was fine. Then the doctor came in and started asking me some questions.

I told her I cannot get enough water (15-18 8 oz glasses a day and I am still thirsty). Of course, I have to go to the bathroom all the time as a result. We discussed my joint pain--thumb, elbow, shoulder and hip. I have been checked for RA, lupus, gout and nothing shows. Bone scans on my thumb (which is the worst) are fine. She asked about any digestive issues, and I told her pasta kills my stomach (diarrhea), that usually my bms are soft and greasy, and that I try to avoid pasta and usually bread because they make it worse.

But, by and large, the joint pain, fatigue, and foggy memory are worse concerns for me.

The first thing she said was it sounds like celiac. She is referring me for blood work, mentioned something about a biopsy, and so here I am--doing my homework!

I read that avoiding gluten can throw off testing. I can't say I have been gluten free, but I don't eat a high level of it, either. My stomach just does better when I don't have the pasta and such.

It felt so good to have someone validate what I was feeling, as I had started to think of myself as a bit of a hypochondriac. Part of me is worried that any testing will be negative and I will go back to feeling like it is all in my head!

Does this sound typical of celiac?

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Eh, if it does, then you probably have NCGI (non-celiac gluten intolegence). There is no testing for that outside of a gluten free trial I belive.

It could very well be. Pasta, and i was (correction still am) a pasta fanatic. The wheaty stuff would set my stomach off and fealt like lead. It did eventually get worse too.

Now i eat a corn/quinoa mix pasta and i'm happy :D

At any rate, you're probably getting enough in ya. Generally its reccommended for those who are doing a trial to do 1-2 slices of bread per day. But i think you can also sub that with other gltueny things.

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Congratulations on finding a celiac savvy doctor. The symptoms you describe are associated with celiac disease and, as Wolfie mentions, gluten intolerance in general. Tlhere is no way of knowing without testing which it is. It is true that low levels of gluten eating can affect test results because the tests are measuring the antibodies your body is making to gluten, hence: no gluten, no antibodies. :) In fact, this is the way to test for compliance with a gluten free diet - the absence of antibodies. I don't know how much gluten you are eating but eat as much as you can manage until your testing.

Welcome to the board and let us know how we can help.

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Thank you for the support and advice. I go in for blood tests next week, so I guess I will up my intake until then. And I will read up on both celiac and gluten intollerence!

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I met a celiac once whose only symptom was severe throat and mouth ulcers... celiac can affect almost anything, even brain and skin.

Good luck with the testing. I hope you get some clear and definitive results. If you are unsure of what the results mean, bring them here. There are a few veterens around here with a wealth of information. :)

And good luck with the gluten consumption... perhaps eat it in the evening before bed to minimize symptoms affecting your day. Best wishes.

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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