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Is This A Coincidence, Doctor?!
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SO my doctors yell at me for going gluten free, well it tool 8 months of pain so they can deal with it.

They tell me that I can't have celiac disease because I have constipation and inconclusive serology, ha, even though I have all the symptoms.

Well, is it a coincidence that I have suffered for four years ( at the beginning, 14, I stopped growing and lost my period. I have been gluten free for two months and wow guess what, I grew 2cm and my period came back today for the first time in four years.

Sorry I needed to rant.

Thanks guys for your support all these months,

Magdalena Tywoniuk :ph34r::PB)

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I also had constipation (all my life) and amenorrhea (for 10 years), so my doctors never suspected celiac. I had many other celiac symptoms, including the infamous "IBS" stuff, but the constipation made me not consider celiac. Only after my abdominal pain became daily and excruciating, did I read a celiac article which listed constipation as one of the symptoms. Going gluten-free helped reduce many of my 'IBS' symptoms (bloating, pain and gas), but eliminating the dairy (after my dairy intolerance diagnosis) made me 'regular' for the first time in my life WITHOUT laxatives, fiber pills or other constipation remedies. :lol: I eat lotsa fruits and vegies and try to choose the higher fiber gluten-free grains, but avoiding dairy did more for regularity than anything else I tried. ;) Unfortunately, it's too late to resolve the longterm amenorrhea--I'm postmenopausal now. :(

BURDEE

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magdalena, you might consider printing out the NIH's position paper that came out of their conference earlier this year which stated that constipation could be a symptom and cannot be used to rule out celiac disease.

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i've read the nih report (as my doctors should) they tell me i am playing doctor and should not be reading 'internet junk'. i'm thinking of just paying for the enterolab test.

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i've read the nih report (as my doctors should) they tell me i am playing doctor and should not be reading 'internet junk'. i'm thinking of just paying for the enterolab test.

Wow! If the doctor new you were talking about the summary of the National Institute of Health's conference and he still called it "internet junk", I'd get a new doctor, as he clearly wouldn't care about progress in his field.

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Hi Magdalena,

I'm so glad you are feeling so much better. I've had Celiac symptoms since the age of 8, and that has been many, many years. I finally realized that doctors didn't seem to know what was going on with me, and started elimination diets of various kinds, concluding that all grains, milk, dairy, egg whites, and yeast were poison for me (this was after I finished all the allergy testing and years of shots ordered by doctors).

A year and a half ago I ordered a complete Enterolab test for my newborn grandson, because he couldn't tolerate any milk. He was diagnosed with Celiac and intolerance to all milk products. Next I ordered a test for all my family member for last Christmas. My sister also has Celiac, my brother doesn't, and the others haven't taken the test yet. I think that Enterolab is so wonderful for offering these tests in such a workable fashion, where you take a stool sample in the comfort of your own home, and once you send the sample off (UPS picks it up at your doorstep) Enterolab sends you the results by email. What could be easier than that?

Best wishes to you as you recover and find the hope and joy that go along with realizing that you have a whole new life awaiting you. I wish you well! Welda

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I would say the doctors don't know you as well as you know yourself. You know what makes you sick and you know what doesn't. You don't need a firm doctors diagnosis to be celiac. YOu just need to know that you get sick from gluten so you know to avoid it. IT is as simple as that

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Hi Magdalena,

i consider taking the enterolab test as well, because my blood tests were negativ and i haven't had the biopsy. Now i'm glutenfree and for the biopsy i would have to go back on gluten. That's why i chose the enterolab test. If your doctor reacts so stupid, i would go to another doctor. And why does he acuse you of playing doctor? Somebody has to do something and if he is uncapeable, then you have to take care of yourself. Don't let him talk stupid. My opinion is you do the right thing. I had also lots of pain every month. Now that i'm glutenfree i don't have pain anymore. I'd say, you know best what's good for your body.

Hope you get well soon, Stef

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Yep, I had a doctor that told me all of the stuff I read is nonsense and untrue. Now I have a doctor that is glad I take responsibility for my health and research things. Amazing what changing doctors can do!

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • 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!
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