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Hubby Finally Getting Help!
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Hi there, this is my first post. My hubby has been diagnosed with IBS and panic attacks and mild agorophobia. Well, his panic attacks are trigered by his stomach problems, so after much procrastination, I convinced him to go to the new doc we have. Well, he was not much help-he did everything but the celiacs test-but his test came out being odd anyway, so they had him come back in. His potassium levels were high, his CO2 levels were low and his ALT and AST levels were boarderline high. So...instead of doing the dang test we wanted, they tested him for hepatitis of all things.

We finally convinced the doc to send him to a gastroenterologist. He was awsome! Yesterday was hubbys first visit and the doc was really nice and said he suspects celiacs as well-but he was also concerned about the possibility of Chrone's. So, he did an extensive blood test for about 8 different conditions/diseases, but we dont the results back for TWO weeks!! I hate waiting!

Besides the fact that my hubby has a huge number of the symptoms of celiacs, our daughter, who has been basically gluten free for the last month, has had huge improvments just in this short time. She is NOT completely gluten free-she still has the occasional bread product-but her chronic constapation is gone, she is off of laxatives, she has started babbling for the first time, she is extremely close to walking-she wouldnt do anything but crawl until the last two weeks-and she seems much less fussy. I dont know if I will have the heart to put her back on gluten to get her tested if her daddy comes back positive.

Anyway, I think I am well prepared if hubby does have it-we have already decided to all go gluten free if he does and I have already started trying gluten free products. Anyway, this is my little-long-intro! Thanks for reading!

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Your hubby might consider eliminating yeast for his IBS.

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Welcome littlemonkeys,

I am glad that your husband is getting the help he needs in finding out what is wrong with him. If he does have Celiac Disease, please try to find a pediatric GI for your daughter (or the same one your husband sees if he sees children). You don't want to keep her 100% gluten free before testing, but I know how hard it is to watch the little ones suffer. I have three kids and for the past two years have fought for my own diagnosis, and then for my kids. I couldn't get any doctor to test them before I was diagnosed, since we didn't have a "family history" of celiac disease and their symptoms are atypical. <_< I now know that most celiacs have atypical symptoms and have finally gotten them to see a wonderful ped.GI at our local children's hospital. He is wonderful and will not stop looking until he knows what is wrong with my kids. He want's a 100% yes or no diagnosis. Which is what I want. Too many of us are passed off as you probably don't have celiac disease. :unsure: Well I for one needed a definite answer. I couldn't even get the doctors to test me, they said I didn't have it just based on my symptoms. I wouldn't accept that and now I know for sure that I DO have it and am gluten free. I feel so much better now! I just recently had to do a gluten challenge for the biopsy, and I am also waiting for my results. I don't like playing the waiting game either. I'm doing it with my kids blood test results and with my biopsy results...

Good luck in a quick diagnosis for your hubby! :)

God bless,

Mariann

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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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