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Frustrated - Want Confirmation!

mbon

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mbon Newbie
mbon
Posted

I went to a GI about a month ago because I was having stomach cramps, gas and bloating constantly. I had a baby 9 months prior, so I thought it was just something from the pregnancy left over. In addition, I was constantly broken out with achne that covered my forehead, although I thought this was unrelated to my stoamch. He said he wanted me to have an endoscopy. He also asked me to chnage my diet for a week and eliminate dairy and then if that didn't help eliminate gluten. I did as he suggested and dairy made no difference. I then quit gluten and noticed a difference within a few days. A week later, I had some ice cream, without thinking that it could contain anything bad, and within minutes I noticed some light cramping. I looked at the container and the 2nd ingredient was wheat flour! ugh! The next 24 hours was awful. On a side note, my forehead was starting to clear up after that week of being gluten-free, and after this experience it began to get really bad again.

I was gluten-free about 2 weeks before going in for my endoscopy and the results were negative. He told me to see an allergist and get tested for wheat because I was allergic to wheat as a child. Negative! The allergist said he wanted to do the blood test for celiac, so I did that last Friday. I just got a call that it was negative as well. I have been gluten-free for about a month, with a couple of slips when I ate something that I didn't realize had gluten. EVERYTIME I eat gluten I have the same symptoms, so I don't get it! The Allergist didn't get it either. He said my symptoms sound like Celiac, but the blood results show there is no way I am celiac. I asked if I was testing negative because I have been gluten-free for a month and he said, "No, the antiboties should be there no matter what".

Any thoughts on this would be great. I know I should be happy with the results, but I am not. I want answers and I thought I had them.

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Marz Enthusiast
Marz
Posted

Heh, you need to have a chat with Raven :D blood tests and endoscopy can be negative even in the presence of severe celiac symptoms. You also went somewhat gluten free before tests which can affect the results. If the gluten free diet is helping, that's really all the proof you need that gluten is poison for you.

ravenwoodglass Mentor
ravenwoodglass
Posted

Heh, you need to have a chat with Raven :D blood tests and endoscopy can be negative even in the presence of severe celiac symptoms. You also went somewhat gluten free before tests which can affect the results. If the gluten free diet is helping, that's really all the proof you need that gluten is poison for you.

Raven here LOL

Trust your body. Even a short time gluten free can effect the tests and some of us, like myself, don't show up positive on blood work even when almost dead.

Childbirth is a common trigger for celiac in women. Having the symptoms show up after having a baby is not unusual.

You have found a great place for info and support. There are quite a few folks here who are self diagnosed. I unfortuantely am not one of them as I didn't even know what they were testing me for, they only kept saying 'you should be glad you don't have celiac, you wouldn't be able to eat anything'. How wrong those doctors were in more than just one way. It took 15 years for me to finally get diagnosed. A couple years later I found this great board and have been here ever since.

Skylark Collaborator
Skylark
Posted

Sounds to me like your body has given you a completely and totally clear answer. You can absolutely and positively be gluten-sensitive without the current tests showing anything. My mother is this way, as are two friends. I was never formally diagnosed since I follow the fairly simple philosophy of "if it makes me sick I don't eat it."

Remember that you are a person, not a test result. Diagnostic tests are useful, but they're horribly limited and you shouldn't let them keep you from getting well.

mushroom Proficient
mushroom
Posted

Doctors really should know better than to tell you to stop eating gluten before you have been tested. It is hard enough to get a positive test result as it is. The bar for normal is set quite high and for an endoscopy to be positive there has to be a lot of damage.

I endorse what the previous posters have said. If you listen to your body it will generally telll you what it needs regardless of any test results.

ravenwoodglass Mentor
ravenwoodglass
Posted

Doctors really should know better than to tell you to stop eating gluten before you have been tested. It is hard enough to get a positive test result as it is. The bar for normal is set quite high and for an endoscopy to be positive there has to be a lot of damage.

I endorse what the previous posters have said. If you listen to your body it will generally telll you what it needs regardless of any test results.

Yes they really should. As my GI told me after I had finally been diagnosed,after being misdiagnosed by him repeatedly and listening to him apologize over and over "You would have been one of those celiac diagnosed by autopsy"

Unfortunately that is likely all too common.

Gfresh404 Enthusiast
Gfresh404
Posted

I was frustrated for a while too - but eventually you realize how meaningless those diagnostic tests are. The ultimate test, when it comes to food, is really how you feel. That being said, it might be wise to rule out other possible disorders, a lot of times issues with gluten are accompanied by other diseases.

I thought for a while that if I could just get "official confirmation," that everything would be better. Frankly, from what I've heard just from your first post - that sounds like "official confirmation" to me. I guess I was just in disbelief that this could have been going on for as long as it did - and that doctors still couldn't find anything wrong with me.

Don't worry - you're not alone, there is a surprisingly large number of people (that I have met - I work at Whole Foods) that have issues with gluten. Despite the fact that mainstream doctors keep claiming that they can eat it no problem.

Just trust yourself.

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missceliac2010 Apprentice
missceliac2010
Posted

Hello there! I posted something very similar to your experience on this board a few days ago! I too was told that I "probably" had celiac, and to stop eating gluten until my tests results came in to "confirm" the dx. When I went in to see my doc, he told me that both methods of diagnosing me were negative for celiac! (Blood test and endoscopy scope biopsy.) But, my doctor's daughter has celiac, so he is very familiar with the disease. When I explained how much better I was feeling and how my symptoms had all but disappeared (unless I am accidentally glutened, which happens often, because I am learning that I am one of those VERY SENSITIVE people)...my doctor told me he was still diagnosing me with Celiac Disease. He said he would run more blood tests next month, but to move forward with the gluten-free way of life and not look back. At first I was very upset and frustrated. I suppose for some reason I wanted to have "proof", or be justified by some textbook method. As a few days have passed, and I am feeling so great, I have decided to heck with some stupid official dx! I know my body, I have Celiac disease, and my doctor agrees with me!

Now I am learning the in's and out's of how to live my new life. I am learning by lots of research and trial/error. Today my joke was that my goal for the day was to "not get glutened"! I did it! I am setting simple short term goals and taking it one step at a time. Tomorrow, I am hitting Whole Foods (I don't have one close to where I live, but my boyfriend does, and I am spending the weekend with him in the bay area!) I heard they have actual TAGS that clearly tell customers which products are gluten free!! How cool is that! I'll pay a little more to feel a lot better! I'm sure as time goes on, I'll get better at knowing what is ok and what is not, but for now, giant tags sound very nice to me!!

Good luck to you, and I hope you can find the same peace that I did with time and the ultimate proof... your health back to normal!

Gluten-free hugs!!

I went to a GI about a month ago because I was having stomach cramps, gas and bloating constantly. I had a baby 9 months prior, so I thought it was just something from the pregnancy left over. In addition, I was constantly broken out with achne that covered my forehead, although I thought this was unrelated to my stoamch. He said he wanted me to have an endoscopy. He also asked me to chnage my diet for a week and eliminate dairy and then if that didn't help eliminate gluten. I did as he suggested and dairy made no difference. I then quit gluten and noticed a difference within a few days. A week later, I had some ice cream, without thinking that it could contain anything bad, and within minutes I noticed some light cramping. I looked at the container and the 2nd ingredient was wheat flour! ugh! The next 24 hours was awful. On a side note, my forehead was starting to clear up after that week of being gluten-free, and after this experience it began to get really bad again.

I was gluten-free about 2 weeks before going in for my endoscopy and the results were negative. He told me to see an allergist and get tested for wheat because I was allergic to wheat as a child. Negative! The allergist said he wanted to do the blood test for celiac, so I did that last Friday. I just got a call that it was negative as well. I have been gluten-free for about a month, with a couple of slips when I ate something that I didn't realize had gluten. EVERYTIME I eat gluten I have the same symptoms, so I don't get it! The Allergist didn't get it either. He said my symptoms sound like Celiac, but the blood results show there is no way I am celiac. I asked if I was testing negative because I have been gluten-free for a month and he said, "No, the antiboties should be there no matter what".

Any thoughts on this would be great. I know I should be happy with the results, but I am not. I want answers and I thought I had them.

mbon Newbie
mbon
Posted
  • Author

Thanks for all the replies. My Allergist said he didn't get it. He said he thought for sure that I had celiac because of all my symtoms. Both Doctors told me to remain gluten free because I must be at least "gluten sensitive". I didn't need them to tell me that. I had certainly planned to remain gluten free. I guess I feel like it is all in my head because I don't have an official diagnoses, but it does make me feel better to know that others have had similar experiences. I have had several strange things happen that could be a result of gluten sensitivity. Like, I went to have a massage recently and she commented how dry my skin is right now. My periods have been almost non-existent (I thought it was because of my recently place IUD), but now that I am off gluten, my period has returned, although still light. My achne is almost gone, but when I accidentally eat gluten the achne returns in full force and my other symptoms return. It has to be gluten, so I will continue to be gluten free.

Thanks again for the support.

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