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Hi everyone,

I've been lurking since March 2010. I think I've read just about every post on the forum and I'm grateful for all the information that has been posted. So I guess it's my turn to contribute as best I can. I'll try to keep it short.

First, I have no diagnosis. I have not taken any tests. And I don't plan to. There were two symptoms that originally brought me to this forum.

1) A distended abdomen that seemed to get worse as the day went on.

2) Unreasonably horrible hangovers from a few beers.

Although the horrible hangovers didn't happen every time I drank beer, it seems like it was the majority. It was so bad I thought for a long time I was just getting food poisoning somehow, but none of my friends ever got sick. The hangovers usually lasted 2 days, complete with vomit, diarrhea, and super sensitive skin that hurt at the slightest touch.

After reading many posts here and identifying with many other symptoms I went gluten free in March. I don't know if I'm Celiac or gluten intolerant or it's all in my head. I do know I feel better. At four months gluten free, everything is better. Not perfect, but better. And I haven't had any more hangovers.

Here are a list of symptoms I have had that have improved in the last four months.

1) pencil thin, broken up, pasty/greasy stool

2) frequent bowel movements ( 6 times a day )

3) frequent urination

4) acne - face and back

5) sweaty palms and feet

6) irritability, anxiety

7) stuffed up nose

8) puffy/swollen face in morning

9) occasional light swelling in ankles

10) swollen knees

11) occasional numbness in fingertips

12) symptoms of reactive hypoglycemia

13) heart palpatations, skipping beats, and ensuing adrenaline rush

14) having a full stomach and still feeling starved - strange cravings which can't be satisfied

15) reoccuring lower back pain

16) muscle twitches - legs and arms mostly

17) muscle cramps - legs and feet

18) unsteady muscles ( for example - my whole left leg shaking when my foot is on the clutch )

19) arms going numb while sleeping

20) awakening with severe vertigo

21) painless bruise like spots which show up on the upper legs and hips after exercise

I do attribute the improvements in these symptoms to my change in diet, but I'm not absolutely convinced gluten is the problem. It could be the reduction in carbs or dairy or something else. ( I am nearly dairy-free, simply because I don't like much dairy )

I follow the diet fairly well. I read labels and I never intentionally ingest gluten. However, I am not extremely careful with cross contamination. I order fries when I'm hungry and there is nothing else on the menu to eat. I haven't worried about cutting boards or shampoos or anything like that. I figure I must have accidentally gotten some gluten many times, but I've never had a reaction. But then again, I never had the day in day out GI pain most celiacs get.

That's it for now.

ynot

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Welcome, you do sound like you belong here. I can really identify with the horrible hangovers. The most puzzling thing for me about them was that I drank nonalcoholic beer. I couldn't understand how in the world I would have hangovers when I never got drunk.

Most of us do need to drop dairy or limit it at first. IMHO though it is not the limiting dairy or carbs that is resulting in the great improvement you are seeing. You do have the option of going back on a full gluten diet for a couple months for testing, but you do risk false negative results even then. There is also the option of going with Enterolab testing. As long as you have been gluten free for less than a year they would still be able to pick up the antibodies. Enterolab does not diagnose though, they simply tell you if you are making antibodies but you body doesn't produce antibodies to something it doesn't want.

Do ask any questions you need to and I hope you continue to improve.

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:lol: Beer always wrecked me too.

If you feel better eating gluten-free it's not in your head. I'm glad to hear you figured out something that helps you feel better.

The full stomach/cravings and feeling starved is thought to be your body wanting particular nutrients it can't get because of malabsorption. You might feel even better on a good vitamin/mineral supplement. B12 is particularly helpful for folks with gluten intolerance.

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Thanks for the suggestions. I will look into some B12 supplements. On a related note, 15 or so years ago I followed a vegan diet. That lasted about a year. I know B12 must often be supplemented, but I never worried about it. I guess I just ate a lot of bread and tofu. Anyway, this is when I had my first ( of two ) really severe depressive episode. Not fun. I guess we could draw some conclusions.

It's interesting to hear that beer, even nonalcoholic beer, wreaked such havoc on others. I wonder if there is something unique about the way gluten in beer is absorbed. Beer really does seem to be the crack cocaine of gluten for me.

As far as testing goes, I don't really feel like I need it to stay on the diet. And I have no desire to challenge gluten.

Thanks again.

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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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