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I Guess I Post Here, Now!
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I've encountered some of you on the pre-diagnosis board, but I think it's time to tentatively start reading in some other areas.  Based on my biopsy (lymphocytes in s.i. and damage to villi - not severe) and gene tests indicating I'm homozygous DQ2, my doctor is confident that I have celiac, despite a negative blood test. 

 

All of this started after a bout of gastroenteritis, which I gather from my reading can turn someone symptomatic. Prior to my stomach virus, I'd noticed a couple of gut twinges in the previous two months, but other than that I was very healthy: Running 5ks, iron levels sufficient to be a regular blood donor, etc. My digestion had always been sensitive, but not in more than an occasionally inconvenient way. But after the virus passed off, I began to develop increasing abdominal pain. First I was misdiagnosed with diverticulitis, then IBS. Meanwhile, I began to develop anxiety and have panic attacks. When I didn't get better they did a colonoscopy/endoscopy and found the inflammation.

 

It... honestly feels like a rather circumstantial diagnosis on which to base a lifelong diet change. But I guess there are a limited number of other things that case lymphocytes in the small intestine, and blood tests were also negative for Crohn's and IBD.  And there's a lot of circumstantial evidence. A month or so before my gastroenteritis, I came up slightly hypothyroid on a routine physical.  And within days of ceasing to eat gluten, my anxiety and panic attacks stopped...

 

...though I'm now about 2.5 weeks off gluten, and while I think my gut feels better, the abdominal pain is still significant. My gut churns embarrassingly loudly after I eat - and that didn't start until about the time I gave up gluten. I'm really, really hoping all of this calms down soon. I hurt!  In a way, I'm glad of a diagnosis, because it means maybe I can stop feeling bad soon, but I wish it were a little more solid.

 

I guess my one remaining hovering terror is that I'll be refractory - I'm 37, so wasn't diagnosed young. With the DQ2, I have a higher risk of EATL, too, so I'm really anxious for my pains to go away and ease my mind.

 

I know it varies widely, but how long does it take to have abdominal pain and gurgling go away? Anybody have any soothing thoughts?

Edited by Lirren
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If your underlying issue is gluten, and you are completely 100% gluten-free, it WILL get better!  Probiotics and digestive enzymes can help tremendously with the digestion and gas - the probiotics help restore your natural, good gut bacteria and the digestive enzymes help your body break down your food so that it can more easily be digested.

A word of caution though - make sure you get gluten-free supplements - they love to hide gluten cooties everywhere.

 

As for being refractory, hopefully someone with more information on this will respond.  However, from what I understand that is very rare and happens more often in individuals who have had a lifetime of symptoms and get diagnosed later in life - much later than 37.  I'm 42 and recently diagnosed.  I had no symptoms but was diagnosed with osteopenia at 40.  From what I've read - and my doctor agrees - that I'll be able to rebuild bone and be fine. So there's plenty of realistic hope!

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2 1/2 weeks isn't very long. Most folks see SOME improvement by then, but I don't know of many who see complete resolution of symptoms that early. As a matter of fact, for most of us the withdrawal symptoms last a couple of weeks. Give it more time. :)

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I got diagnosed at 48 and had at least 30 years of undiagnosed symptoms!  I am here to tell you that it can get better!  I am 20 months gluten free, my body is still transitioning, but I have a clear mind and debloating tummy!  I feel okay to good most of the time.  Take in nutritious food and GET BETTER.

 

D

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2 1/2 weeks isn't very long. Most folks see SOME improvement by then, but I don't know of many who see complete resolution of symptoms that early. As a matter of fact, for most of us the withdrawal symptoms last a couple of weeks. Give it more time. :)

 

 

Waugh! I hope so. I am so depressed, anxious, and frustrated. A month before the gastroenteritis set me off, I could run five miles. Today I shambled a quarter-mile on the treadmill before I had to stop - not from lack of energy, but because the impact of every step jarred my guts and caused too much pain to bear! (Besides, I typically take that kind of pain as my body's sign that I am Doing Something Wrong.)  I am getting my energy back enough to really want to run - and having sleep problems and jitters with the anxiety, so I'd really like to burn some of that energy off and rest better at night. But so far, my guts aren't cooperating.

 

Come on, healing. Soon please. :(

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You will be running again soon. Listen to your body and allow it to heal. It took me about six weeks to see any results and then I suffered a back fracture thanks to celiac disease. A few months later and I was back on the trails. Riding a new comfort bike too. Looking forward to riding my road bike soon!

Have patience!

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You will be running again soon. Listen to your body and allow it to heal. It took me about six weeks to see any results and then I suffered a back fracture thanks to celiac disease. A few months later and I was back on the trails. Riding a new comfort bike too. Looking forward to riding my road bike soon!

Have patience!

Thanks!  I am so sorry for your back fracture but glad to hear you are back in action - congrats on the new bike!

 

Grrr, patience. I'm short on it. :)  I know it's good advice, though.

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Patience and eliminate all dairy (even in your supplements/probiotics) until you heal more. Of course stay away from gluten forever!

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Patience and eliminate all dairy (even in your supplements/probiotics) until you heal more. Of course stay away from gluten forever!

 

Yar, good point on the probiotics. I had come to that conclusion about dairy but wasn't thinking about the probiotic - or else was hoping the dose would not be big enough to matter. Maybe that's why I'm hurting so much today.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • 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.   
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