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Can Someone Advise Me...
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3 posts in this topic

Hi,

I desperately need some advise.

I've been having dull stomach aches and pressure in colon for the past few years. It's worse after a eat. I also suffer from constipation and haven't hsd diarrhea for at least 4 years, not even once. My other symptoms are chronic depression and anxiety for the past 16 years. And even as a child I was quite anxious, always worrying, but that could be due to my very strict father, whom I was terrified of. At 13 i developed eye inflammation (posterior uveitis), doctors did several tests but never found the cause. I have had recurring uveitis over the years and developed chataracts on both eyes. I'm 38 now. The past 5 years I have been getting numbness that starts in my hands and spreads to my whole body from my neck down to my toes. It stays for 2 to 3 months and dissapears very gradually. MRI of spine didn't show signs of MS. I've also suffered knee pain for a long time. Vaginal thrush was also a problem for me since I was a teenager, but that has resolved after a strict anticandida diet. Last year I had an endoscopy which showed a hiatus hernia and a blood test showed H. Pylori.

Depression and anxiety are my worst symptoms of all, and antidepressants never helped.

Do you think all of this could be due to gluten intolerance? I had bllod tests done last year but they came back negative. I asked for my levels of IgA to be tested and they were quite low. I read that they can be low in gluten intolerant people.

Started a gluten free/casein free diet a week ago, but my stomach ache is still there and I feel very irritable and down. The only improvement I've seen is my face, which used to be extremely oily has become drier the past two days and my severe acne which I've been battling for at least 15 years havw startwd to clear up. I would go for a biopsy but what if it shows that I don't havw celiac, what do I do then...

I would really appreciate your opinions.

Ana

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Ana, it COULD be celiac, or it could be non-celiac gluten intolerance. It could be something else entirely. If you want to get tested you need to be eating gluten. If testing isn't important to you you could just try the gluten-free diet and see if your symptoms improve. A week isn't long enough to see any results so don't let that discourage you. If I remember correctly, I went through two weeks of gluten withdrawal - headaches, foggy brain, constant hunger, and just an overall sense that something was wrong. Then that lifted. it was after three weeks of being gluten-free that I started seeing results.

 

But some people take much longer to see any relief. And if you have a lot of damage, although you may notice things getting better it could take a couple of years to completely heal.

 

You should also read the Newbie 101 thread here. It will help you to eliminate any chance of cross contamination. For example, if you are still using your old toaster, your old strainer, your old wooden spoons, you are getting gluten. If you use the same mayonaise jar that someone dipped a knife into after touching bread, you are getting gluten.

 

After reading Newbie 101, look around and read as much as you can on this forum. You will learn a lot. And ask as many questions as come to mind. We are here to help. :)

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Welcome to the board. :)

I agree with Bartful, it can take a long time for symptoms to improve. I had some improvements in the first few weeks, but I was still having symptoms improve at 6 month gluten-free. This disease requires a lot of patience.... Unfortunately.

This report has lots of info on celiac disease and it's tests: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf. Pages 11-12 discus the tests.

Good luck with whatever you decide to do,whether it is celiac disease testing or going gluten-free.

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    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
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