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Falling Apart

Teresa83

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Teresa83 Newbie
Teresa83
Posted

I am new to this site. I found it while searching for info on whether or not to be tested for celiac. After years of agony I tried going gluten free. I figured it would at least do no harm. But I quickly discovered I was a different person without gluten. I felt great for the first time in many years. I was gluten free for two months, then decided to go ahead and be tested for celiac for my family. I have two children and my sisters and my mom seem to have some symptoms. So here I am, on day two of eating gluten again. I feel awful! I am supposed to be doing accounting homework but I cannot possibly comprehend the words for the fog. I'm in pain and stressed out. I didn't really have a question or anything helpful to add but thought it would be nice to know I'm not alone in this, that there are other people who are like me and survived having to eat the poison again...

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researchmomma Contributor
researchmomma
Posted

I am new to this site. I found it while searching for info on whether or not to be tested for celiac. After years of agony I tried going gluten free. I figured it would at least do no harm. But I quickly discovered I was a different person without gluten. I felt great for the first time in many years. I was gluten free for two months, then decided to go ahead and be tested for celiac for my family. I have two children and my sisters and my mom seem to have some symptoms. So here I am, on day two of eating gluten again. I feel awful! I am supposed to be doing accounting homework but I cannot possibly comprehend the words for the fog. I'm in pain and stressed out. I didn't really have a question or anything helpful to add but thought it would be nice to know I'm not alone in this, that there are other people who are like me and survived having to eat the poison again...

Hi you aren't alone. Many people who try to do a "gluten challenge" feel horrible. Many do not make it and just opt to skip getting an official diagnosis. My daughter went back on gluten after only two weeks and the change in her personality and health was absolutely astonishing. She felt horrible. Back gluten-free she is a totally different kid.

You have to do what is right for you. My daughter still sometimes regrets not having that biopsy to rule it out but it doesn't matter because she clearly cannot tolerate gluten.

Hang in there.

mushroom Proficient
mushroom
Posted

Hello and welcome to the board and our little community. I do feel for you, having to do the gluten challenge - that is possibly one of the most awful experiences ever dreamed up :unsure: Just the very fact that you feel so dreadful when gluten is reintroduced should be diagnostic enough, I believe. But no, we have to pass the silly test which requires us to intimately study gluten for two months :huh: Feel free to come here and vent any time you like to let off steam/pressure. We all synpathize with you.

ndw3363 Contributor
ndw3363
Posted

For that very reason, I do not have a formal diagnosis. I tried doing the gluten challenge and simply couldn't make it. I was going through a very stressful and important stage in my career, and the fatigue and migraines were too much for me. Lately, something is getting me though cause I have MASSIVE brain fog that is driving me bananas (and I HATE bananas!!) :) Don't know if it was the wine I had over a week ago, my increased carb intake, or maybe a supplement. But I haven't had a drink in over a week, cut WAY back on the carbs/sugar, and I'm decreasing my supplements by one each day to figure it out. I think I'm reacting stronger to soy now, so maybe that's it.

Good luck to you! I hope it's all worth it and that you get the outcome you want - none of us WANT to have the diagnosis, but I think it makes it easier down the road when you try to explain things to friends/family/doctors. I would love for my mother to get tested (99.99% sure she needs to), but she won't do it. She got a blood test years ago that came back negative so she's convinced that's all there is to it.

ravenwoodglass Mentor
ravenwoodglass
Posted

You mention going through 'years of agony'. Has your doctor been seeing you during that time? If you have been seen regularly, pehaps diagnosed with IBS, known by us as 'I be stumped', anemia, or other health issues go to your doctor and let him know that you had gotten great relief from the diet. Let him know you are doing a challenge and what your reaction has been. If your reaction is severe when gluten is reintroduced some doctors, admittedly not many, will give you an 'official' diagnosis of at least gluten intolerant. If he won't do that he may be able to give you some medication to help with your symptoms. Be aware that you can still have a false negative with testing even after the challenge.

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      how much gluten do I need to eat before blood tests?

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