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txtrndo

By txtrndo
in Coping with Celiac Disease

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txtrndo Newbie
txtrndo
Posted

It's 3:35am and I can't sleep, woke up at 5am saturday after staying up til 1:30. About a month ago doctor said my bloodwork indicates celiacs (2 of the 4 were pretty high) i did a little research and immediately started trying to go gluten free(about 2 weeks of a loose attempt I suppose, no hair product or medicine changes etc...)Last week met with GI doc's Physician Asst. that screened me for setting up the endoscopy which is April 30th. She told me I should not eliminate gluten until after the endoscopy so they will get an accurate read of damage it is doing. Like a kid turned loose in a candy store I have been eating everything I suspect I will never eat again, and although I suspected I might not feel good I did not expect this...I feel as if I am hopped up on mahuang, guarana and ephedra. (I had schlotzkys at lunch, lasagna for dinner and a beer with my bedtime movie) I am having some anxiety, took an advil pm an hour ago and still buzzing. Just reading your posts is helping me some, what do you recommend, try to eliminate it again and alter the endoscopy or just eat normal (I never eat like this I consider these meals indulgences and am only doing so now as if it's my "Last Request" before,,,well, you know. This entire year has been crazy and all my issues I've blamed on Graves Disease, hyperthyroid, radiate thyroid, then hypothyroid. Anyone out there like that? Hypo wasn't getting in order with the dose of synthroid doctor thought should work on me and that's what led up to testing me for celiacs. I remarried last year (middleage woman) and my husband is thinking I'm unstable...ya' think? I don't think he believes me if I say forgetfulness or tearyness/anxiety is from all of this. Now that I've been a gluten-glutton EVERYTHING is extremely wrong with me physically and emotionally and I'm trying not to let him see....I feel so alone.

Glad to meet others who in some way may be able to relate. I've rattled on, thanks for letting me vent here. I have my grandson's first birthday today at 3:00, and sleep is nowhere in sight for me.....

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Guest hightop girl
Guest hightop girl
Posted

I really have no answers for you because I am very new to this. What I can tell you is that is site and several of the forums have helped me more in the last month than anything else. I was diagnosed with Grave's after it came out of remission and had my thyroid radiated 20 years ago (I am 44). It takes awhile to get the synthroid (or whatever replacement you use) regulated. I am only 5'5" and about 115 and take enough for a 200 pound man due to absorption issues. I started the diet before my endoscope. I had no idea that it would change anything, and the doctor didn't tell me not to. So I will probably never know for sure that I have Celiacs, but I do know that I have many symptoms and risk factors (lots of autoimmune issues that are related) and that gluten free I am healthier than I have been in 18 years (since my second daughter was born), so I am not going back to eating gluten just for a test to confirm that I SHOULD feel better without gluten. That is just an individual choice that I made with my internist. I was so sick that she was about to hospitalize me, so she did not want me to eat gluten again.

I guess knowing what comes back on the tests may be important for other people because so many other intolerances and autoimmune issues are related. It just wasn't for me because I had 3 doctors telling me to cut out the gluten and I felt so much better.

Hang in there.

hightop girl

Wonka Apprentice
Wonka
Posted

I went gluten free before I was tested (I had done an elimination diet and discovered for myself that gluten was my problem) so I have never received a diffinitive diagnosis. This is now come back to bite me in the @ss. Because my doctors can not prove that I have celiac they will not test my children. They know I can't have gluten, they say the genetic test is too expensive so they won't do them (they both, my GI and GP, want to be responsible???) and so because I don't have a positive celiac diagnosis they say they have no indications for testing my children (this is in Canada where the tests are covered by my medical).

The endoscopy is not that far away, hang in there and stay on the gluten until the test then go on the diet is my advice. Your doctors will take this more seriously if the have the proper diagnosis.

As for you husband, find material from valid sites and read them out loud to him until he understands the connection. My husband will not read anything about my conditions (IgA deficiency, fibromyalgia, celiac and now iron deficiency anemia) so I find material and when he is in the office or in bed I read out loud to him. He needs to know that sometimes my brain is soooo foggy that I need his help to retrieve information that normally I can access no problem. He needs to know that sometimes, when I'm glutened, that I will be a total mess with gas, bloating, fatigue, brain fog, migraines and debilitating fatigue. Now I'm also having hormone issues, I'm 50, and am having the wildest body ride of my life, he is learning (more reading out loud lol) all about the change of life and that my lack of libido has absolutely nothing to do with him. I think it helps. I remind him that I love him but with all my fatigue and fluxuating hormones, gas, bloating and nausea (from the iron supplements) are the cause of my lack of interest not him. Arm him with knowledge.

YoloGx Rookie
YoloGx
Posted
I went gluten free before I was tested (I had done an elimination diet and discovered for myself that gluten was my problem) so I have never received a diffinitive diagnosis. This is now come back to bite me in the @ss. Because my doctors can not prove that I have celiac they will not test my children. They know I can't have gluten, they say the genetic test is too expensive so they won't do them (they both, my GI and GP, want to be responsible???) and so because I don't have a positive celiac diagnosis they say they have no indications for testing my children (this is in Canada where the tests are covered by my medical).

The endoscopy is not that far away, hang in there and stay on the gluten until the test then go on the diet is my advice. Your doctors will take this more seriously if the have the proper diagnosis.

As for you husband, find material from valid sites and read them out loud to him until he understands the connection. My husband will not read anything about my conditions (IgA deficiency, fibromyalgia, celiac and now iron deficiency anemia) so I find material and when he is in the office or in bed I read out loud to him. He needs to know that sometimes my brain is soooo foggy that I need his help to retrieve information that normally I can access no problem. He needs to know that sometimes, when I'm glutened, that I will be a total mess with gas, bloating, fatigue, brain fog, migraines and debilitating fatigue. Now I'm also having hormone issues, I'm 50, and am having the wildest body ride of my life, he is learning (more reading out loud lol) all about the change of life and that my lack of libido has absolutely nothing to do with him. I think it helps. I remind him that I love him but with all my fatigue and fluxuating hormones, gas, bloating and nausea (from the iron supplements) are the cause of my lack of interest not him. Arm him with knowledge.

By the way--wild yam natural progesterone cream (if gluten free) helps make the midlife change less rocky. Seriously! I had the worst time without it. For a short while I also took pregnenalone to counteract the crying jags. I also found taking gluten-free co-enzyme B complex helped quite a lot too. I liked Country Life tabs the best since they have no sorbitol--also best taken on an empty stomach.

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