Not Sure What To Do.

[Bwarning3]

Hello, I'm new to this forum and just some had some questions. I was never officially diagnosed with Celiac disease but was tested for gluten intolerance which I have. That doctor told me to reintroduce gluten again use a rotary diet. I did reintroduce and my symptoms returned and were worse then ever. Hypoglycemia, constipation, foggy ness, fatigue, muscle weakness, migraines. I do not usually have a lot lower GI issues but the constipation was an issue for weeks. I realized that I would have to cut out Gluten. The more I have researched I have found that maybe some other things could point to celiac disease. My permanent teeth came in discolored when I was a child and I always suffered with the above symptoms. I really don't want to go back on gluten just to be tested because of how bad I feel, although I have been off only a week. Would a blood test show at this point or would i have to eat gluten foods for 3 months still? I don't know what to do, I would like to know but is it worth it. I worry too because my children could have this and we wouldn't know if there is a link to it. My 10 y.o. dd shows with a wheat allergy but was negative for Celiac disease. But, she has molars that have worn enamel, and she off and on will have GI upsets and very large BMs. What should I do?

[1desperateladysaved]

Hello, I'm new to this forum and just some had some questions. I was never officially diagnosed with Celiac disease but was tested for gluten intolerance which I have. That doctor told me to reintroduce gluten again use a rotary diet. I did reintroduce and my symptoms returned and were worse then ever. Hypoglycemia, constipation, foggy ness, fatigue, muscle weakness, migraines. I do not usually have a lot lower GI issues but the constipation was an issue for weeks. I realized that I would have to cut out Gluten. The more I have researched I have found that maybe some other things could point to celiac disease. My permanent teeth came in discolored when I was a child and I always suffered with the above symptoms. I really don't want to go back on gluten just to be tested because of how bad I feel, although I have been off only a week. Would a blood test show at this point or would i have to eat gluten foods for 3 months still? I don't know what to do, I would like to know but is it worth it. I worry too because my children could have this and we wouldn't know if there is a link to it. My 10 y.o. dd shows with a wheat allergy but was negative for Celiac disease. But, she has molars that have worn enamel, and she off and on will have GI upsets and very large BMs. What should I do?

You may want to ask yourself some questions:

1. What advantages would the test do for you and what disadvantages?

2, Does gluten intolerance go away? It sounds like your probems have been lifelong so far.

3. Do you need the test to justify not eating gluten? Is someone putting pressure on you about it?

4. Can you eat gluten when you know that your symptoms will reoccur and that you might do further damage?

We may like you to share how you were tested for the intolerance. Already, symptoms when you stopped eating gluten would be confirming. You may now begin to get some withdrawl symptoms that may make you feel there really is no improvement. Your reactions to gluten may get stronger. I think that reading other posts in the forum can help you answer questions that you need to answer.

Best wishes and get well*********

Diana

[Happyw5]

I have never been diagnosed with celiac. It started as a wheat allergy and a gluten intolerance. When they did the bloodtest for celiac on me, I was already wheat free, so I assume that was part of the problem. I decided I was done with gluten and it's been about a year and half and I don't miss it at all. I am frustrated that I didn't get a diagsosis because I have five children and they get frequent issues that I wish I could say "I have celaic, so chances are you may too" but until there life is being limited(sick frequently or potty issues all the time) I am not having them tested. We do have a pretty gluten free home. Our meals are all gluten free, but they do get regular bread, snacks, and school lunch with gluten. My 9 year old son doesn't even eat bread and many other things because they make him feel icky!

I guess what I am saying is I never needed a diagnosis to justify my self...But I would need one to justify taking my children off gluten completely...

[Bwarning3]

I have never been diagnosed with celiac. It started as a wheat allergy and a gluten intolerance. When they did the bloodtest for celiac on me, I was already wheat free, so I assume that was part of the problem. I decided I was done with gluten and it's been about a year and half and I don't miss it at all. I am frustrated that I didn't get a diagsosis because I have five children and they get frequent issues that I wish I could say "I have celaic, so chances are you may too" but until there life is being limited(sick frequently or potty issues all the time) I am not having them tested. We do have a pretty gluten free home. Our meals are all gluten free, but they do get regular bread, snacks, and school lunch with gluten. My 9 year old son doesn't even eat bread and many other things because they make him feel icky!

I guess what I am saying is I never needed a diagnosis to justify my self...But I would need one to justify taking my children off gluten completely...

I don't need a diagnosis for me either, but I feel it would help doctors take me more seriously with my children. But I will probably just wait until they get older and then have them tested. I am a nurse so I am a fact person, I never assume but I do know I cannot eat gluten and probably have celiac disease or highly predisposed to it. My Grandmother has rheumatoid arthritis and who knows may have had celiac disease. Thanks for your input.

[Happyw5]

I don't need a diagnosis for me either, but I feel it would help doctors take me more seriously with my children. But I will probably just wait until they get older and then have them tested. I am a nurse so I am a fact person, I never assume but I do know I cannot eat gluten and probably have celiac disease or highly predisposed to it. My Grandmother has rheumatoid arthritis and who knows may have had celiac disease. Thanks for your input.

Dr's don't take me seriously either. My family is a talking celiac issue, however, noone will go get tested. My sister has unexplained infertility and thyroid problems. My other sister has severe constipation and gets sick every time she eats. My other sister has severe food allergies and throat spasms all the time. My brother has epilepsy, my mom has thyroid issues and my dad has diabetes... No one wants to give up gluten so they all just deal, it's frustrating when they won't even try the diet for a couple of weeks...Oh well, I hope all goes well with you!

[Skylark]

Hello, I'm new to this forum and just some had some questions. I was never officially diagnosed with Celiac disease but was tested for gluten intolerance which I have.

There is no validated test for gluten intolerance. What test was done and what were the results? It may have been that your Dr. misinterpreted a celiac test.

If I read your post correctly you've only been gluten-free for a week? My understanding is that only a week off gluten isn't enough to throw a celiac panel to the point where you need to challenge for months. I'd give it a week or two eating gluten and then get the testing done.

[Bwarning3]

There is no validated test for gluten intolerance. What test was done and what were the results? It may have been that your Dr. misinterpreted a celiac test.

If I read your post correctly you've only been gluten-free for a week? My understanding is that only a week off gluten isn't enough to throw a celiac panel to the point where you need to challenge for months. I'd give it a week or two eating gluten and then get the testing done.

Actually I was sort of gluten free but cheating often, and then I went full on eating whatever I wanted and I started feeling really bad. I was even nauseous quite a bit. But since I realized I can't have it at all(not what the doctor said) I went back on a gluten free diet and that has been about a week. feeling much better already, again.

As for the test it was done by Alletess Lab. I went to an ENT who is also an Allergist. She was recommended by a holistic lady I knew. The test was IGG and she test for food reactions to 96 foods. Most of the what I was "allergic" too was gluten containg grains, dairy, eggs and Oats. How the test read was, less then 0.200 was negative and over was positive. For gluten I was 0.391 and that was specifically gluten not the specific grains. Wheat and Rye I was positive and barley, bran and malt I was borderline. But that I think is not gluten just the rest of the grain. I was told people become "allergic" from over eating something and I obviously had eaten too much gluten so therefore I was intolerant but if I removed it from my diet and then only ate it once or twice a week I would be fine. I never went back to that Dr because I questioned her reasoning. I was never tested for Celiac Disease per se but I believe this one test is part of that comprehensive panel. I never thought to be tested either, kicking myself now. But when I look back on my life and other people in my family I wonder, is there a connection. I have read that there is such a thing as non-celiac gluten sensitivity, maybe that is what I have.

I have an Aunt who when young was very small and the doctor was concerned because she seemed like she was not getting enough nutrition. In recent years she has had unexplained health issues that medication does not help.

I am going on vacation in a week, there is no way I am going to eat gluten and then feel awful on vacation. If I thought a test my show something I would get tested next week but I have no guarantees either way.

[Skylark]

I think you should work hard to get blood testing done before you leave for vacation. See if your Dr. will call in labs in the next couple days. Mine will make a lab slip for me to pick up if the test is warranted. Agreed it isn't worth ruining your vacation with gluten!

Your results are interesting and suggestive of celiac. I can see why you are thinking in that direction. IgG gliadin is prone to false positives as far as celiac but having an IgG reaction to all the gluten grains seems significant.

[Bwarning3]

I think you should work hard to get blood testing done before you leave for vacation. See if your Dr. will call in labs in the next couple days. Mine will make a lab slip for me to pick up if the test is warranted. Agreed it isn't worth ruining your vacation with gluten!

Your results are interesting and suggestive of celiac. I can see why you are thinking in that direction. IgG gliadin is prone to false positives as far as celiac but having an IgG reaction to all the gluten grains seems significant.

I agree. I was actually considering that. I might try and overload on gluten for a couple days and see if that helps, and then I will have time to go back on gluten free, and maybe do a some detox tea for a few days to help flush it out. My doctor will pretty much do whatever I ask within reason. Thanks for your help and suggestions.