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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

Frustrated With Drs
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I am getting so frustrated with my dr. I was told and have read that, after being diagnosed with celiac, I should be thoroughly checked for vitamin/mineral deficiency and have a bonescan. Neither my family nor gi dr has ordered them. I haven't pushed the issue but am thinking I should. I have symptoms that Might fit ....horrible brain fog, vertigo, light headed, anxious, joint pains, headaches, fatigue, insomnia, adbo pain, face rash( not dh), bruising, brittle hair, sweating, hot flashes, nausea, constipation, bowel urgency, low blood sugar, etc

I also asked to be tested for hashimoto but was told as long as my tsh was fine, they are sure I don't have it.

The only thing the dr did for me was refer me to a dietician to get more fiber in my diet and get me to eat more regularly.

Should I push for further testing? My gut feeling is to get bloodwork for all of the above plus food allergies. But the dr makes me feel like I'm crazy for even asking and wasting their time. .

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I forgot to mention I am iron deficient, and my b12 is normal. They did test those a month ago.

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I did none of those things. I assumed my vitamin levels were low and treated appropriately. Bone density should improve with proper diet. Maybe add in weight bearing exercises just in case.

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Hmmm... it can take a while to heal from severe damage, although it seems like two months should at least have the GI stuff improved. Are you sure you have eliminated all the chances to get gluten cross-contamination in your kitchen? Did you go off dairy as well? Also soy is worth checking by eliminating it for a while. I had to eat gluten-free, casein-free, soy-free for my first year to feel well.

My very good doctor is not inclined to bone scan me. I don't think bone scanning is the standard of care for women who are not past menopause. He is watching my D carefully as I was deficient last fall and at this point I'm on 3,000 IU a day, plus at least 800 mg of calcium that I get in my supplements. If you're premenopausal you will build bone up pretty fast with enough calcium, D, and weight-bearing exercise. My Dr. checked iron, D, B12, and B6 when I was feeling bad. Plus a CBC to make sure there wasn't an infection or mono. Is your Dr. treating the iron deficiency?

I had a lot of your symptoms when I was hypothyroid but not the GI stuff - that's something you are eating. What was your TSH? Some doctors use the old range of <4.5 as normal, but there is growing evidence that "normal" should really be below 2.5 or 3.0 at the highest.

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I had a Dr. who didn't suggest anything not even a gluten-free diet. But has been willing to do the tests I've asked for. I'm glad I asked for a Bone Density scan as I do have osteopenia and need to have that watched.

Because I didn't do the scope (the wait time was +6 month) and only had a very high + blood test. I feel like the bone density scan lends strength to my celiac diagnosis if another Dr. questions it.

My blood levels were fine when they tested for Vitamins but that was 3 months gluten-free.

Also because I know about my bones it explains why for the first time in my life at almost 40 we are seeing the beginnings of cavities at the dentist. Hopefully, I will be able to replace my tooth density as well with diet and suppliments.

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I did none of those things. I assumed my vitamin levels were low and treated appropriately. Bone density should improve with proper diet. Maybe add in weight bearing exercises just in case.

Same here. I was so disgusted with the medical profession by the time I figured out I had Celiac and then had to ask them for testing, I decided to avoid them all together. I was down to 97 pounds and just assumed, from all my symptoms, that things were deficient and my bone density abnormal. I knew I was severely anemic because that's the one test they seem to only want to do. I started taking vitamins at optimal dosing and not going by the MDR and doing weight bearing exercises, along with a whole foods diet. It took 3 years for all my Celiac related symptoms to disappear completely but disappear they did.

I am doing exceptionally well, considering how sick I was 6 years ago, and all without the AMA. They would have just messed it all up, as usual.

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I am getting so frustrated with my dr. I was told and have read that, after being diagnosed with celiac, I should be thoroughly checked for vitamin/mineral deficiency and have a bonescan. Neither my family nor gi dr has ordered them. I haven't pushed the issue but am thinking I should. I have symptoms that Might fit ....horrible brain fog, vertigo, light headed, anxious, joint pains, headaches, fatigue, insomnia, adbo pain, face rash( not dh), bruising, brittle hair, sweating, hot flashes, nausea, constipation, bowel urgency, low blood sugar, etc

I also asked to be tested for hashimoto but was told as long as my tsh was fine, they are sure I don't have it.

The only thing the dr did for me was refer me to a dietician to get more fiber in my diet and get me to eat more regularly.

Should I push for further testing? My gut feeling is to get bloodwork for all of the above plus food allergies. But the dr makes me feel like I'm crazy for even asking and wasting their time. .

Dr.'s ugh!!! First they won't test for Celiac when you ask for it. Then when you figure it out yourself, they want you to go back on gluten to verify your self-diagnosis. I had a Dr. who said TSH is normal you are fine. I had all the symptoms of Hashimoto's. Went to another Dr. and told him I have Celiac and I want to be tested for Hashimoto's. Tested Postive for Hashimoto's. So, I have it, but the TSH is still normal so they don't want to medicate. He sent me to an Endocrinologist...who said when the thyroid burns out and effects TSH I will have to go on medication. Until then, he wants me to get an official diagnosis for Celiac, since I am self-diagnosed. NO WAY!! I was so sick there is no way I would eat gluten for one day let alone months. I went back to the general practioner and asked for blood tests for vitamin deficiencies that are common in Celiac's. I got them. Advocate for yourself. If you want vitamin testing and Hashimoto's testing, get a new Dr. until you get the tests you need. It is your body you have a right to the tests you want.

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You're only 2 months in to this.

You need to make sure you are not getting cross contaminated.

You may have to evict gluten from your house. Including if you have pets eating it, there is gluten free pet food for allergic pets (that we humans benefit from).

Keep a food diary. Write down what you eat, and how you react to it.

Try eating a higher fat, higher protein, lower carbohydrate diet, and eating smaller, more frequent meals. Try to really limit sweets and sugars, and increase vegetables.

Here is what you can do without the idiots at the medical office.

Take a multivitamin, a B complex, a calcium supplement, (but not tums) with some magnesium and some vitamin D. Sometimes one supplement will have all 3. The important one is the B complex and the calcium/magnesium D.

Google "gluten free" in front of any vitamin or mineral supplement, to search and see what kinds are. More of them are putting "gluten free" on the label. But the status of anything can change at any time.

Go to the drugstore or health food store. Read labels religiously. Select vitamin/minerals. Go home.

Your thyroid might be messed up anyway. But don't wait months screwing around with the insurance industry when you can supplement over the counter anyway for other reasons.

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Thank you for all the thoughts and suggestions. I'm so glad this site exists!!

I will try the Supplements suggested.

I will decrease the amount of gluten containing products in my home as much as my family will tolerate.

I will attempt to contact my dr about further testing.

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Hi, just read your post tonight and you sound like me with the anemia. I have celiac disease, anemia, lupus and hashimotos. Please find a Dr. who will do what you need done. I am going to address the iron issue. Please, please find a good hematologist who will take care of your iron. Hashimotos and celiac will cause the low iron. As your gut heals the better your levels should become. In the meantime you should talk to a hematologist about the anemia. With all of your symptoms it is easy to recognize that you cannot yet absorb iron. You need to start IV iron therapy. Also, you need a good iron. The best iron on the market is EZFe 200mg or the Forte if you are pregnant or need a vitamin type iron. You don't need a prescription to get it at most pharmacies, however, it is sold behind the counter. This iron is the best because it is absorbed into your system without requiring digest. It is a polysaccharides. I hope this helps a bit. If you live anywhere near Louisiana the best hematologist here is Dr. Georgia Reine.

Hope this helps.

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Dr.'s ugh!!! First they won't test for Celiac when you ask for it. Then when you figure it out yourself, they want you to go back on gluten to verify your self-diagnosis. I had a Dr. who said TSH is normal you are fine. I had all the symptoms of Hashimoto's. Went to another Dr. and told him I have Celiac and I want to be tested for Hashimoto's. Tested Postive for Hashimoto's. So, I have it, but the TSH is still normal so they don't want to medicate. He sent me to an Endocrinologist...who said when the thyroid burns out and effects TSH I will have to go on medication. Until then, he wants me to get an official diagnosis for Celiac, since I am self-diagnosed. NO WAY!! I was so sick there is no way I would eat gluten for one day let alone months. I went back to the general practioner and asked for blood tests for vitamin deficiencies that are common in Celiac's. I got them. Advocate for yourself. If you want vitamin testing and Hashimoto's testing, get a new Dr. until you get the tests you need. It is your body you have a right to the tests you want.

Similar story here. My doctor does not think I have Celiac because the blood test said I didn't. However, I felt better off wheat and gluten. I did the gluten-free for a while, then slowly slid back into a "normal" diet. Once the dermatitis herpetaforma came back, was biopsied (wrong place apparently), I was sent to a dermatologist who agreed that the biopsy result of "insect bite" was wrong and that I had some form of contact dermatitis. It looks like classic DH! Off to a naturopath, who did diagnose me with Celiac, anemia and a couple of other things (last week).

With the thyroid, I had the same path of yes, no, yes, no. It took 5 years of being told that I was fine until my thyroid ended up having to be radiated and now I am on thyroid replacement. I feel better than I did before, but why did it take so long??? Add this to 32 years of Type 1 diabetes, and I am feeling like my immune system is really not my friend :)

So my gp,the local Celiac "expert" thinks I do not have Celiac disease, and will not until I go back to wheat. Not going to happen. I have a life that is already been put on for health too many times to do it again when the results are clear. Do I go off insulin to prove I have diabetes? I am keeping my eyes open for a doctor accepting new patients!!!

Newly diagnosed and feeling frustrated,

Neen

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I would seriously look for a different doctor. You do not deserve to be treated with disrespect. I saw a doctor in January 2011 at the University of Chicago who was very rude to me and chewed me out because I had some blood work done in another lab instead of their own. Then when I told her my concerns about cross contamination, she told me that I was "paranoid" and needed to seek "psychiatric evaluation." Needless to say, that was the LAST time I ever saw her!

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Neener wrote:

... "Do I go off insulin to prove I have diabetes?"

That is so classic it needs to viral, or at least get accepted as a gluten intolerance truism.

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After 40 years of docs telling me its "stress", I finally figured it out. Gluten makes me sick. Web sites let me know it takes 6 hours or more to feel the effects. I could poison myself with pancakes for breakfast and feel fine, add cookies or piece of cake for snack and feel fine, add sandwich for lunch and feel fine.... have a salad for supper and double over with gut wrenching pain. What???? I only had a salad.. what's with that!!! A serious food diary told the tale. Pancakes at 9 am means big ow in the evening, and all night and the next day... three days of no energy, blurry mind, two naps a day just to get through.

A bad reaction to a new med spoiled my appetite except for "just a piece of bread to settle the middle" till I was so sick I was in the ER. They put me on a "no food" diet (liquids and fruit only) till I recovered and sent me home on the same. Weeks later, they gave me permission to eat the normal stuff. I got sicker and sicker. Bingo! Clue! Its been a challenge to find out what foods have gluten in them. It turns out there's quite a few and all of my favorites. Bread, cake, cookies, pasta, egg rolls, almost anything in a box mix.. and instant coffee.

I've been on Celebrex for arthritis since it was invented. Last time I saw doc he said : "I'll bet you don't have arthritis. Your hands should be awful but they aren't". I've been able to cut to half dose, but still have big pain without it, so something else may be going on. More research to do.

"Medical Practice" means docs don't know everything.... and don't care as much as we do about our individual bodies. Its up to us to do the detective work. Thank Heavens there's more food without gluten than with it.

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after my Celiac Dx I made my own appointments for a DEXA scan and told my doctor to run vitamin and mineral level tests. I guess it depends on your insurance if you can do that, but if I were you, I'd absolutely insist on proper care. If your doctor won't do it, then find a new doctor. (easier said than done in some areas I know)

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