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Everything posted by russtay1

  1. I have Addison's Disease and have long suspected a gluten allergy. All my celiac tests were negative. This article (see below) interests me. It is very possible that even the replacement doses of steroids we take for adrenal insufficiency could cause false negatives in celiac testing. I worry more about WHY I have so many autoimmune disorders. I have four. I suspect a gluten or other food allergy as the cause. I think the best thing to do, if test results are negative, is avoid gluten and see how you feel. Anne http://qjmed.oxfordjournals.org/cgi/reprint/95/2/79 The last few paragraphs are the most interesting. I'll paste them here: "There have been reports in the literature of an unmasking of coeliac disease in patients discontinuing chronic steroid therapy and steroids have a well-recognized therapeutic role in the management of refractory coeliac disease. In a treated Addison
  2. Here are my test results: tTG, IgA 1 Deamidated Gliad IgA 4.5 Deamidated Gliad IgG 1.7 Reticulin Ab IgA Negative Reticulin Ab IgG Negative IgA 234 mg/dL Everything seems to fall in the normal or negative range.
  3. It is maddening to think that I don't have a gluten allergy but need to give up gluten anyway. I already know how difficult the diet is and don't want to do it again. But then, I hear ya! If it worked before...why am I hesitant to just do it again? I guess I am trying to find OTHER reasons for these deficiencies and symptoms. I have an appt with my doc on Monday to talk about this. I want to figure out why I do not absorb B12. I think both deficiencies are related to my Adrenal Insufficiency. A lot of Addison's patients have Vit D and B12 deficiencies. But why? Based on my research, it looks like a gluten allergy is one of the most common reason for malabsorption. And gluten allergy has been closely tied to Addison's. So I was hopeful the tests would show gluten allergy. Before the blood draw, I had been eating wheat for months and made sure I had a ton of it within the days before the test. I asked my doctor to send me the lab results. I will post them here and see if anyone can see a mistake. And if any tests are missing. She recently tested my thyroid levels and all was OK. I take 137 mcg per day levothyroxine. But I will ask her to test again on Monday. I am also going to ask her to test my folic acid level. Can anyone think of other tests that might help figure this out? I am scheduled for a B12 and D test in September, as that will be the end of 3 months of D (big pills weekly) and B12 (injections) treatment. Maybe she can test those levels now just to see. I've decided to add depression to my list of symptoms. It is probably a side effect of all the other problems but hey..it's on the list. Last night I had quite the pity party. Symptoms: - Exhaustion and brain fogginess, lack of concentration, I sleep like a dead person... thru thunderstorms. - Frequent gas (every day, most of the day..so embarrassing) This is a brand new symptom..never had it before when eating wheat. - Deficiencies - B12 and D - Depression In pursuit of "normal", Anne
  4. Hi All - Here is my story. Over the years I have had extreme exhaustion, brain fog and frequent B12 deficiency. I have been hypothyroid for years. Since doctors could never help me, I tried giving up wheat several times over the years... each time with some good results. I would doubt that I ever had an allergy in the first place and start eating wheat again. And then start feeling bad again and then...give up what again. So it was a cycle. Turns out I have Addison's Disease (Primary adrenal insufficiency). I was diagnosed in April after an adrenal crisis put me in the hospital for a week. Now that I take adrenal hormones so that I can live a "normal" life, I thought... let me start eating wheat again. So I did. I've been eating wheat for four months. About 2 months ago, I started having a lot of flatulence and burping. I was also diagnosed with a B12 and D deficiency. I am also tired again and my brain isn't working as well. Of course, I ran to my endocrinologist and he tested my adrenal hormones.... all are OK. So I should feel like a normal person and I don't. Last week, my primary care doc ordered the celiac panel and it came back negative. I was almost hoping it would be positive. So now here I am, feeling bad again, with doctors that are not helping me figure things out. My questions: Why am I so tired? They tell me I should feel "normal" with my Adrenal medication a the right levels. And I don't. Why the vitamin deficiencies? I eat such good food! I mean... dark leafy greens kind of good food. I am in the sun quite a bit this summer. Why all the gas? Can I be allergic to wheat and still have a negative celiac panel? You all are the experts. Maybe you can help. Thanks! A
  5. Thanks all. I am new to all this and will meet with doctor in office for first time since hospital stay. My BP, sodium were both low. And blood sugar. And my brain was not working. I am sure he is testing all the stuff. Of course I have been googling like crazy and learning all about the problems of cortisol, aldosterone and ACTH. I am gluten free again since yesterday afternoon. If it has helped my brain fog in the past that means it must help the Addison's. Because that is a symptom of Addison's. I really do think there is a connection and it might benefit people here to know that they should see an endocrinologist if the believe they have a gluten allergy. I wish I had thought of it much sooner. Anne.
  6. I just got out of a week in the hospital, was diagnosed with Addison's disease. I am beginning to think there is a definite link to the gluten allergy and Addison's. A little history.. 1) Off and on for past 15-20 years I have had long episodes of weakness. 2) In recent years have tried gluten-free diet twice. 2a) First time, I felt better... energy returned. 2b) After lapsing back into regular diet, weakness returned. This was several years later. I went to my doctor and had the gluten allergy test while still eating wheat. It was negative. I gave up wheat anyway... and felt better. 3) SO...after lapsing into a gluten free diet AGAIN.... last few months, extremely tired and weak, memory problems... and a whole list of symptoms. Last week, into hospital with severe leg cramps and weakness. Low, low blood pressure (88/50 is a number I remember). Extremely poor memory. 4) I was admitted with a sodium count at 110... should be at least 135. They finally let me out today with a count of 129 and a supply of hydrocortisone and declomycin and a 1000 ml per day liquid restriction. I think I will be in for daily bloodtests..first one is Sunday morning at the hospital. I now have an endocrinologist. I was just laying on the couch and thought "GLUTEN!!" I scooted into the computer and googled the two together and ended up very interested. Anyone here have Addison's and find that the gluten free diet helps? Anyone here considered getting a workup at an endocrinologist? It might be worth your time. Feeling normal for the first time in a very long time.... OK, back to couch..thinking tomorrow will be gluten free and will ask the doc if he thinks my theory of a connection is valid. Interesting research: Risk of primary adrenal insufficiency in patients with celiac disease In the article: "In conclusion, we found a highly increased risk of AD in individuals with celiac disease. This relationship was independent of temporal sequence. Methods for autoantibody testing of AD and celiac disease has improved recently with better sensitivity and specificity using 21- hydroxylase (2) and transglutaminase (16) autoantibody testing for AD and celiac disease respectively. We therefore recommend that individuals with AD should be screened for celiac disease. We also suggest an increased awareness of AD in individuals with celiac disease." AD=Addison's disease OK, NOW back to the couch!
  7. I think I am looking for moral support. I don't think I can get my 16 year old to listen at this point. So let me worry a little bit and I will be patient with him. History - First, I have celiac and am gluten-free. I was always weak and starving... ate all the time and was obese. Gluten-free now, my brain works again and I have energy. My son has had intestinal problems his entire life. He had rectal ulcers and then a rectal prolapse that require surgery to correct (8th grade). He then had a bout of ITP. ITP is short for a very long name but means very low blood platelet count. His was extremely low and he required transfusions for many days at a time. I think it is an autoimmune disorder. It came and went away over a period of a few months...terrifying. He still has intestinal upset but nothing too troublesome. So, this is a teen who has seen enough of the medical community. He will not discuss getting tested for gluten intolerance. He says he is fine. But his family history, his autoimmune history and his "intestinal" history scare me. I have seen first hand the incredible impact going gluten-free has had on me... and I didn't realize this until I was in my 40's. I don't want him to always feel tired and mentally slow. I see this in him. He argues that he is fine. I may bring this up at his annual physical (while he is still young enough for me to be in the room!). Maybe the blood test will be positive (mine wasn't). I worry his blood test will be negative and he will never try a gluten-free diet. I know... worry, worry, worry.... this does me no good. But maybe I can convince him to try it eventually. He wants to be a powerhouse, lean body guy.. but I think he doesn't have the energy. If I can convince him to TRY gluten-free... he may feel stronger. He eats gluten in every meal. Cereal, cereal, sandwiches, pizza, and so on and so on. Did I mention cereal? Several boxes a week! So gluten-free would be a big challenge for him. Now that I have written all this, I hesitate to post. What good does all this worrying do? I'll post it anyway.
  8. I am referring to a diet I saw in Woman's Health magazine. A sugar-balancing diet. And seeing whole grain bread made me realize how much I miss it. I've been gluten free for a while now and am looking for some variety. I really like the Kinnikinnick english muffins.. but they are definitely not high fiber. I may try making bread. I will search here for recipes. Thanks for the advice. Anne.
  9. Thanks Deb. I'm thinking of "grains" like seeds and nuts...but specifically high fiber carbs. The diet recommends high fiber carbs because they take longer to digest. Is there such a thing as high fiber carbs in a gluten free diet? I am looking for a commercially available bread. Thanks, Anne
  10. A lot of diets I see recommend a piece of whole grain bread. All the gluten-free bread I have tried has very little fiber. Are there any commercially available breads that have a "nutty" texture? Thanks, Anne
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