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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Osteoperosis and Thyroid Issues

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Hi Nita. I'm only 55 and have osteopenia (diagnosed several years ago). My grandmother had SEVERE osteoporosis and I wonder now if she had celiac. I've read that untreated celiac can lead to it. Maybe once your intestines heal you will improve. I've also taken Armour thyroid since last August. Armour has calcitonin in it which helps the bones. I had another dexa scan earlier this year after I fell and broke my foot. While I'm still in the osteopenia range I wasn't any worse and if I read the test right I'm a little better (on account of the Armour). Sorry to hear about your tiredness. That's been a way of life for me and I hope it goes away after I've been gluten-free for a while. Still waiting my test results from enterolabs. If they haven't sent them by next Wednesday (4 weeks from when I sent it to them) I will e-mail them. Definately don't think I'll be looking for a nutritionsist. LOl Hugs, Carol B

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Guest NitaB

Carol,

Thanks! It's good to hear from others in this boat! Helps, believe me!

My Dr. appt. today was a bum's rush for me. I am so disappointed in Dr's! I did get samples of Evista for osteoporosis, for a month. The Dr. chose this one, as it's not as hard on the digestive system, compared to Fosamax. She still really thinks I have Gerd and IBS only! I asked her if the osteoporosis was caused by malabsorption from celiac disease. She said no, it hasn't even been proven I have celiac disease! I told her how tired I was. She said to walk more anyway! I give up, why am I on this hard diet, if no one thinks I really have celiac disease????? I'd like to know what she thinks caused the lesions, that have flattened villi, and looks like celiac disease????? She was in a hurry to get me in and out, that I didn't get all my questions asked. I sure wonder what we pay for sometimes! :angry:

Well now I'm done ranting, for the moment, anyway!!! :rolleyes:

Carol, I hope you get your results back soon! I can't believe you're still waiting! Keep us posted!

Nita

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My Dr. appt. today was a bum's rush for me. I am so disappointed in Dr's! I did get samples of Evista for osteoporosis, for a month. The Dr. chose this one, as it's not as hard on the digestive system, compared to Fosamax.

If you do feel strongly that you are a Celiac, and therefore, are on an entirely gluten-free diet, make sure that "Evista" is gluten-free, also....many medicines aren't.

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Hi Nita. I WOULD NEVER take meds for osteopenia/osteoporosis. They havent been proven yet and what about side affects. If it's from celiac disease it should reverse if your intestines aren't to far gone once you start absorbing calcium. I would think so anyways. Could also be from low thyroid. Have you had your thyroid tested by a reputable doc? i.e. TSH, FT3 and FT4. If the TSH is 2 or higher you have a problem and the FT3 and FT4 should be in the upper part of the range and higher. that can also cause tiredness. Yes, I cant believe I'm still waiting either. I do know that they have a backlog due to the increased number of people wanting their test. It took over a week for the kit to even get to me and thats what they told me. So I'm giving them the benefit of the doubt. Wednesday they will hear from me if I haven't heard from them yet. That's only because one gal told me her results came in 4 weeks. Another thing, it's time for a new doc. You might go to about.com's thyroid site (Mary Shommon). They have a listing of top docs who think out side the box with thyroid, maybe they also do so for celiac. Or post where you live and maybe someone knows a good doctor. Just a suggestion. Take care. Hugs, Carol B

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Guest NitaB

Hi Carol!

I just had a blood test with my regular physical. My thyroid is normal, as is my whole blood test, except for a bit high cholesterol. I'm not anemic, and they just aren't sure I have celiac disease! I am doing the gluten-free diet, and feel good, no more stomach pains. I'm just tired more than I should be! I made myself go to the family picnic today, and had a good time. I guess I just need to go, try to eat right, and make the best of it!

I am trying the Evista. I don't know if it's the right thing. But, my Dr. just thinks because I'm a small person (10 pounds overweight, but short and not heavy!) that I'm the type that gets osteoporosis and my body doesn't assimilate calcium or the hormones I just quit taking!!!! Yes, I got this, while taking hormones for the last 5 years! I happen to think I didn't get use of these things, due to celiac disease and the lesions! I don't know why she wouldn't think that! Odd situation and unsettling.

Thanks for your reply! I'm still waiting to hear what you find out!

Thanks celiac3270 for your comments. Yes, I need to do the gluten-free diet, just to feel better, and prove that I do, on the diet!

NIta

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I should warn you that just because your doctor says your thyroid is normal doesn't mean it is. I have learned so much this past year that I never knew. You might go to about.com and type in thryoid and read and see what you think. Just a wild suggestion. LOL Hugs, Carol B

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My grandmother had SEVERE osteoporosis and I wonder now if she had celiac

I meant to mention this in my other post, but forgot to: my grandmother has SEVERE osteoporosis....the worst her doctors have EVER seen....lots of bone/back issues. For example, on her spine, she has not only osteoporosis, but also scoliosis and some other things that I can't pronounce. She also weighs very little, bordering 100 pounds (and she was, at one point, very tall: 5'11"...but now she's shrunk a bit from the osteoporosis). I think the low-weight, in addition to osteoporosis made her a good candidate for celiac disease, but of course, at 80 years, undergoing a dramatic diet change isn't worth it...... :( Anyway, she did go get the bloodtest cause she wanted to know. It turns out that she "doesn't have it", although, who knows what a scope would have said -- like I said, before, though, it's not worth changing the diet, anyway -- so no point of the biopsy...and, she has enough tests being run on her...she doesn't need anymore to check if she has something that isn't worth changing anyway at 80 years old....since your intestines don't turn around in a day......:(

While in a Osteoporosis and Thyroid thread, my mom has to take a pill for her thyroid (too slow, but I don't know what it's called....the most scientific I can get is that it doesn't produce rhodopsin, so she gets it in a pill...etc.; a common thing). She, also, "doesn't have Celiac" although I'd say that some of her symptoms match celiac disease. Bloating after eating a lot of gluten (like a big subway sandwich, or something with a lot of bread like that). She also had stomach problems as a child; like I had as my main symptom. She would have cramps sometimes as a kid (my main and worst symptom). In addition, she had a symptom that a Celiac I know also has. She would, after dinner, feel really nauseous, and run to the bathroom, vomit, and then come back and feel fine. Another Celiac I know has the same thing (make that: HAD the same thing...his symptoms have gone away).

Finally, my brother has the same "figure" as I do....he weighs the same as I did at his age, is really skinny despite eating a lot (he eats a good dinner, then has a HUGE "dessert": a few pieces of watermelon, a big bowl of ice cream, sometimes some fudge cake or brownies, and this rather gross "Pirate's Booty" (a type of "popcorny" thingy covered in cheese...I think it's disgusting, but he loves it). And yet, he doens't gain a lot of weight. Since the diet I've gained 10-15 pounds so I no longer look grotesquely thin, but rather, like a skinny kid -- I could use another 10 pounds.... :) ....anyway, my brother isn't sick, but because of his figure/weight, I thought he might be an unsymptomatic Celiac....two blood tests were done....and he's "not a Celiac". Funny, I'm supposedly the only Celiac in my family, and yet, I'm living amongst people who look like they have it!...crazy!!!

-celiac3270

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That's quite a story celiac3270. Has your family thought of doing the enterolabs test. Sure would make sence that if you have this they could too. Hugs, Carol B

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Hi! I'm brand-new today to the board. I can relate to so many of the things I have just read! My first remembered experience with digestive problems was a vomiting siege I had as a 4-5 year old. It was severed enough so that I was taken to the hospital. Throughout childhood I was given enemas with soapsuds for constipation every once in awhile. My parents apparently also had problems because they kept something called blackberry balsam in the medicine cabinet, and also various medicines to combat constipation. As a teenager I took over my own bowel stuff including enemas. I had sessions of extremely painful stools all day , not sure just how frequent, but often enough. I would sit in the bathroom and cry. Would take Blackberry balsam to stop it and then various medicines to start up again. Before going to college, I got to a doctor who gave me penicillin. After that the painful sessions stopped. Eventually I was given Zymenol to combat constipation . that is a mineral oil, vitamin B preparation . Can't get it any more and anyway, mineral oil isn't a good way to go. (ha!) . I have gone to various clinics since then. Finally received diagnosis of ibs at Mayos. Not a big help as you all know! Now I am being tested for Celiac . Have had the blood tests. Will decide about the scope thing after the results come back. I also have gerd. Had my gall bladder removed last Feb. Did not help any of my symptoms. I am lactose intolerant as well. If all the tests come back negative, I think I will go on the diet anyway since false negatives seem to be common. And one can be intolerant of those grains without necessarily being a true celiac. Have any of you read the book "Dangerous Grains" by James Braly and Ron Hoggan? I don't go along with all they have to say, but there is quite a bit of good stuff about celiac. Incidentally,

I am 75 years old and still tutoring and helping our teachers at school. I walk alot in spite of quite a painful right heel. Hope , even at this late date to get a better handle on my digestion problems with the Lord's help. These boards on the internet are a real blessing. Ruth

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That's quite a story celiac3270. Has your family thought of doing the enterolabs test. Sure would make sence that if you have this they could too. Hugs, Carol B

It would make sense to do some other tests....but the doctor's tested my entire family...my brother's been tested twice...and I think that everyone but me is convinced that he doesn't have it. The doctor thinks he's fine, my parents no longer suspect that he has it, etc. I don't know if they'd be too receptive to a suggestion of additional testing....:mellow:

am 75 years old and still tutoring and helping our teachers at school. I walk alot in spite of quite a painful right heel. Hope , even at this late date to get a better handle on my digestion problems with the Lord's help. These boards on the internet are a real blessing. Ruth

Wow, Ruth, so you've been having your symptoms for a long time.....71 years! This board is really helpful and informative....quick responses from people who not only know what they're talking about, but also understand what everyone here is going through, having similar issues, themselves....it's great.

-celiac3270

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I just got back my celiac blood tests from Mayos this week. Forgot to put the paper back in my purse. But they were all very low ranging from 2 to 9 of the "normal" readings. My doctor doesn't think Mayos will be willing to do the biopsy after such low reading. I told him I intend to go on the celiac diet anyway. He suggested a dietician. I had that appointment. She felt I should try a modified diet, the one recommended by the Minnesota Health Department ( I think that's their title). It is quite a bit more lenient than the SCD diet I was contemplating. The dietician thought I should stay on the Minnesota diet for a few weeks then try the diet list I found on www.celiac.com. and finally the SCD diet. I guess I am inclined to go the other way. Start with the SCD and gradually add things after 6 months or so. The science behind the SCD diet seems to me to make sense. I don't anticipate great trouble following it. Have the dietician's guidelines for needed nutrients, calories, etc. I am also in process of concocting a letter to a Dr. I saw a few years ago in the GI depaartment at Mayos outlining my present problems, the gallbladder surgery with no relief, the now alternating diarrhea and constipation leaning more to diarrhea, I pass little small bits of stool first thing, progressing to large bunches of squiggles. Lately I have been experimenting with balancing magnesium and calcium supplements. This may be contributing to current problems if I haven't got the balance right. I do use a tablespoon of Milk of Magnesia at bedtime, half a 350 mg. calcium tab with each meal and a magnesium stearate capsule at breakfast. The bedtime M of M. seems to ensure that I do have a stool every day for the past week and the in between bits and squiggles is better caliber and more firm. I was also using stool softener at bedtime. Didn't do that last night and will keep on leaving it out. I really am torn between wanting to get a proper diagnosis and wanting to get off wheat. These squiggles of stool look to me like they are coming directly from my small intestine. I continue to have strong burning from esophagus to rectum and over to my right side ab. Will see my primary physician hopefully next Tuesday. They have same day appointments availablle after 3:30 p.m. the previous day. I get too long winded. Thanks . Ruth

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