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Self Diagnosis/new Doctors
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5 posts in this topic

Gosh, I am so sick of explaining myself to doctors! I have been to so many in the last few years it has done my head in!

After my last run in with one who refuses to look at anything but my blood pressure and pregnancy tests, I decided to just give up and take my own self diagnosis.

I gave up eating most gluten (a few things I wasn't aware of snuck in there!) and I felt GREAT. I haven't been blated or sick, I get up early and don't have trouble sleeping. No going to the toilet every half hour, and I have had so much energy.

I decided to try gluten again after 2 weeks to see if I had any reaction. The first day I was fine - the second day I was so so very sick. I had some of the worst stomach pains, and could not move. I was so bloated I felt like a helium balloon. I couldn't sleep and had terrible anxiety.

After all of this I plan on going gluten free, but first I am going to a celiac specialist I found close by. I am so excited and hopeful, I can't wait for my childhood GP to send me my referal!

I really hope that this will give me some closure, or at least point me in the right direction.

I'm also really scared - I hope this is the source of all my problems. What do you think?

medical background

* Failure to thrive - baby/infant

* Father also had failure to thrive for unknown reasons as a boy

* Small bowel biopsy as a baby revealed scoured/burnt villi

* Depression/anxiety caused by suspected chemical imbalances

* Joint problems including TMJ

* Constant stomach issues all my life - always put down to illness/flu

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I think you should have been diagnosed as a baby if you had blunted villi back then! Many here, including myself, can relate to your frustration of being dismissed byy doctors. I went through so many I began to wonder if maybe I just really WAS a hypochondriac. Since being dx with celiac my health has done a complete 360. I never dreamt I could just feel WELL! It keeps getting better too! You are definitely on the right track. Make sure you keep scarfing gluten until your tests are done though- for some, recovery cN happen too fast and mess up your tests!

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I think you should have been diagnosed as a baby if you had blunted villi back then! Many here, including myself, can relate to your frustration of being dismissed byy doctors. I went through so many I began to wonder if maybe I just really WAS a hypochondriac. Since being dx with celiac my health has done a complete 360. I never dreamt I could just feel WELL! It keeps getting better too! You are definitely on the right track. Make sure you keep scarfing gluten until your tests are done though- for some, recovery cN happen too fast and mess up your tests!

Thanks :) I find it amazing too that I wasn't diagnosed!

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medical background

* Failure to thrive - baby/infant

* Father also had failure to thrive for unknown reasons as a boy

* Small bowel biopsy as a baby revealed scoured/burnt villi

* Depression/anxiety caused by suspected chemical imbalances

* Joint problems including TMJ

* Constant stomach issues all my life - always put down to illness/flu

Don't forget

* Changes from recent 2wks gluten-free & reaction from 2 days gluten challenge.

It's part of the medical history now.

Good luck w/ the doc!

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Don't forget

* Changes from recent 2wks gluten-free & reaction from 2 days gluten challenge.

It's part of the medical history now.

Good luck w/ the doc!

Thank you, I'll make sure to include it!

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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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