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I Am New At This
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Hello I am new at trying to be gluten-free. I had never heard about celiac disease before a few months ago. For years I have been sick and doctors never could figure out what was wrong with me. I had all the main celiac disease symptoms. The past two years I started gaining weight drastically. I had always been underweight and then all of a sudden I gained almost 30 pounds! To make a long story short I heard about celiac disease went gluten-free and felt a lot better. Then I ate Glutten and got the blood test and it came back Neg. But I know that does not mean much. So I went back to being gluten-free and I have lost almost all my weight in a few short weeks. I have been reading the messages and most people seem to gain weight when they eat gluten-free. I think all my weight was water weight I was swollen everywhere. You couldn't even see my ankels! Is this a symptom for celiac disease? I have been very careful at what I eat and notice that I get puffy if I make a mistake like eating out. I have given up eating out all together. I try salads and they still make me sick. Everything except eating what I make at home.

--My question is can celiac disease cause a person to gain water weight?

I am just curious, I know I have not been diagnoised by a doctor but I think they way I feel going gluten-free speaks for itself.

thanks for your advice

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It is difficult to think about going back on to a normal (gluten-containing) diet if you feel better gluten-free.

However, the only real way to find out if you have celiac disease & not another condition is to eat a normal diet and be tested then for celiac disease.

As you had been gluten-free before you had a test before this may mean you had not had sufficient gluten to cause a reaction.

However, it may be that you do not have celiac disease & the test showed that.

For information about how much gluten is needed prior to a test for celiac disease please see:

http://coeliac.info/suppboard/viewtopic.php?t=504

It is a shame if you feel you cannot eat out because you are frightened of eating gluten but if you do not have celiac disease at all and your problems are due to something else which can be resolved you should be able to eat out OK.

If you do have celiac disease then a local celiac disease support group should help you find a safe place to eat gluten-free.

Some people who are overweight can be diagnosed with celiac disease.

I have not heard of a GFD causing weight loss through water loss.

For a proper diagnosis you may wish to talk to your doctor and go back on a normal diet for long enough to have a gluten reaction and be tested again for celiac disease.

If this is negative again you may want other tests to find out what is actually the cause of your problems.

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Hi KayJay:

I do not know if water weight is a symptom of celiac disease or not but given the fact that you lost the weight that is a good sign and I wouldn't be worried abou it :)

I am sure you know that because you were gluten-free before the testing is maybe the reason the test came back negative. However I was eating gluten before/during my testing (except for some foods that made me very ill, I tended to stay away from those) and my test still came back negative. My GI doc now tells me that sometimes when a person recently develops a disease it sometimes does not register at first, basically it needs time to show up in blood-work or of course damaged villi in the small intestines.

Since you are currently gluten-free and it sounds like you did not get a proper diagnosis I would recommend Enterolab. They perform stool panel tests, which are more sensitive than blood and you DO NOT have to be on gluten for them to be accurate. But in my opinion an improvement on a gluten-free diet is a test in itself, if you did not have celiac disease/gluten sensitivity the diet would not make a difference in your health!

I do hope you are feeling well and continue to do so....

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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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