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Gluten Intol - Self Diagnosed... Any Other Tests I Should Have Done?
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Hello all!

I have been on an elimination diet for 1 month (and feeling fabulous) - and today I confirmed what I've been suspecting: gluten intolerence. I had 3 Tbs of high fibre cereal, 1 slice of whole wheat bread: symptoms were feeling of excessive fullness, very slight nauseau, heartburn, flatulence, and fatigue. So it's a gluten free life for me! But that's no big deal and we're coping well under the circumstances. Thankfully chicken, rice, potatoes, bananas and an abundance of fresh veg are freely available. We're in rural southern Thailand and I daren't go to the hospital here. I am however headed over to Penang, Malaysia for a short period and I was wondering if there were any blood tests I should have done just to see if all my "levels" are okay - like my nutrient levels etc? I had a bone density scan 18 months ago (before Gluten intol confirmation), would it be wise to have another to see if there's been a change for the worse? I've been on an iron tablet for the last month, as well as a multi vitamin. A friend with Celiacs recommended I take a calcium supplement, which I have also been doing.

Any advice would be greatly appreciated thank you!

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Hello, and welcome.

Celiac, from what I have read, is always harder to handle in a country where you are not so familiar with the language and the medical system is not so familiar with celiac. It is difficult enough in a country where everyone supposedly knows the ropes :( It seems that you are happy with your self-diagnosis, and you just want to manage it properly.

The things celiacs are often deficient in (it is a disease of malabsorption) are Vitamins A, E, D and K, and folate (B9), plus minerals magnesium, calcium, zinc and iron. The worst deficiencies are B12 (easily manageable with a sublingual methocobalamin tablet) and D, which if left untreated can lead to osteoporosis. and also one of the two forms of anemia (either iron deficiency anemia which can be tested by testing your ferritin level), or pernicious anemia which is a deficiency of B12 and/or folate - these are the two kinds of anemia.. So if you want a starting point, see if you can find a doctor to check all of the above. If not, at least B12 and D and ferritin. If your D is low it is important to have a DEXA scan to check your bone density, and to get a prescription for high-dose D because the recommended 400 IU of D is nowhere near enough to bring you back into range. The B12, if low, can be handled as above with a sublingual which should be able to be purchased OTC. Then a good multiple vitamin and multiple mineral in addition should be a big help - not the usual US recommended RDA, but one with much more than the 100% , If you are low in ferritin (have not been there, done that) it is more problematic because iron is not easily absorbed in tablet form and sometimes injections are required. I hope someone else will chime in on that. I note you have been taking iron and calcium and your previous DEXA scan was good, so if you are not deficient in D you will probably be okay there.

Glad you have a celiac friend to talk to because sometimes we feel alone in this journey. :)

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Thank you so much for the detailed reply mushroom!! Will test for as many of those as possible. Yes I'm as happy as can be with the results, don't want to have to eat gluten again for weeks on end only for them to give me proof on black and white. I'm just trusting my body on a day to day basis and I have not felt this good in a long time. I would not dare go for any testing here as celiacs is not very prevalent at all in Thailand - and of course there's the language barrier. It was difficult enough trying to find iron tablets!! The hospitals in Penang, Malaysia are as good, if not better than most first world hospitals (a LOT of people come here for "medical holidays" - and it costs a third of what I'd be paying in South Africa (which is by no means cheap for locals!!!). So fingers crossed the results won't be too bad. Thanks again. Much appreciated! :)

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    • 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!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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