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StephE

Should I Even Bother?

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I am trying to decide whether to get "officially" tested for celiac, even though I am 98% sure that's my problem.

My history (in brief!)

2 years ago, I started having major blood sugar lows. At the same time, my 10 y.o. son also experience seizures. We were also having almost identical symptoms. Stomach troubles, mood swings, depression, low cholesterol, electrolyte imbalances. I went to an internal medicine doc, his diagnosis: stress and/or prediabetes (I'm 40). I had NO risk factors for diabetes, and it seemed he didn't hear me when I said my son had the exact same symptoms. I bought a blood sugar monitor and found that out blood glucose was dipping as low as 25 mg/dL. An endocrinologist said I had reactive hypoglycemia, and that there was nothing he could do about it. My son was also diagnosed with reactive hypoglycemia. We both continued to has stomach ailments, mental fog, and mood swings/depression after switching to a vegan diet (although the diet stabilized the reactive hypo).

Why I think I have celiac

I went on a raw food diet (felt great), and on a very vegan, fresh food diet (great!), started to notice bread was making me very, very ill. I got sick for a week after eating bread. I stopped eating it, then made a home made loaf, ate it, and got sick for almost 2 weeks. Mental fog, depression, blood sugar craziness, diarrhea.

My history with physicians

I have been to see a dozen docs, none of whom even mentioned celiac. I feel like I've been run through the medical mill and spent a ton of money with no results. I basically had to diagnose myself with reactive hypoglycemia, and my primary care doc ignored other signs like frequent bowel troubles, low electrolytes (dangerously low a couple of times) and low cholesterol. I came across Celiac by accident, and went on a gluten free diet a week ago. I feel like a different person! I feel quite good, though I think I also have a sensitivity to tannin, because my stomach is getting upset by tea, coffee, red wine (haven't drunk red wine in a year or more).

Should I get a "real" diagnosis?

I have no health insurance, and so going to see a doc and getting officially tested is going to cost me around $600 minimum that I can't really afford. Is it worth getting tested? From what I can tell there aren't any real advantages. I am so tired of the medical profession, and I really don't want to go. However, I guess I am afraid that without a "real" diagnosis this disease won't be taken seriously. Any advice would be gratefully received.

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There's a lot of 'personal opinion' here.

I would say don't bother. The treatment doesn't require a prescription, and any associated illness that might arise will be dealt with based on their symptoms, not on having "Celiac" in your chart.

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I went through a zillion doctors before I figured out was wrong with no help from them. My current doctor says that I know far more about Celiac than she does. She says that if certain foods make me sick don't eat them. If your diet works for you then stick with it.

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The only possible downside I see in self diagnosing (self-diagnosed here) is for your son in school. Schools seem to want to see the "piece of paper" diagnosis, before they will provide special care for your child to keep him gluten free, even as far along as a special meal plan for the dorms if he is going away to college. That would be the consideration for him.

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The only possible downside I see in self diagnosing (self-diagnosed here) is for your son in school. Schools seem to want to see the "piece of paper" diagnosis, before they will provide special care for your child to keep him gluten free, even as far along as a special meal plan for the dorms if he is going away to college. That would be the consideration for him.

My son's school doesn't matter much. I sent in a doc note saying he was hypoglycemic, and yet he was fed (amongst other things) frosted flakes for breakfast! He's had three major sugar crashes this year and two were foods he obtained at school. They really don't seem to care (and it's a good school), or they just don't have the resources to be food police :/

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It's a friggin waste of time. Don't bother. My mom and doc wanted me to see a GI specialist. Saw him last week and he kinda asked a couple times...maybe not directly but "why are you here, i don't have a clue what you're talking about. i only know about celiac disease, i know nothing about food intollerances and other intolerances." he wanted to do a fecal test to check for fat and giardia but i think i decided this morning that i'm not gonna do it due to the cost of the test and they most likely won't find anything.

self diagnosed on everything....intolerance to gluten/dairy/soy/legume/nuts/latic acid/artificial color...and possible problems to raisen, potatoes and apples(unsure yet).

Marsha

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It's nice to know for definite but when you start feeling like 'the boy who cried wolf' then you know it's time to take control of it yourself. Furthermore the blood test and even the biopsy seems to be far from 100% reliable so there's that as well.

One thing that a diagnosis is good for certainly in the UK is that you get staple foods such as gluten-free breads, pastas etc on prescription. If you don't cook from scratch like me then it can become very expensive. I don't know the position in other countries though.

You could try Enterolab to satisfy yourself you definitely are producing antibodies for gluten and either take this to your doctor or ask for a blood test based on that. At least then you have that as backup.

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I think you should probably keep searching for a good doctor, if you can - but I'd troll the local celiac groups, see if they have anybody they would recommend.

The reason?

1. about 20% of adult diagnosed celiacs regain their full digestive abilities. Most of us will be vitamin deficient and need supplements to actually get enough vitamins. But you need a doctor to properly test you for vitamin deficiencies and help you with that, because sometimes, the amount of vitamins needed to keep you healthy would be dangerously high for someone who is actually absorbing properly.

2. You need a celiac knowledgable doctor for you down the road. it's an auto-immune disease, which means that there are things that go with it, just like other auto-immune diseases: food allergies, for example, are more common in people with celiac disease.

3. Your son...I would do what I could to have him diagnosed, but that's going to require a REALLY good doctor - possibly you can find one that you can tell the symptoms and results to, and save up and get the genetic test done to see if your boy has the genes for celiac disease. There are some doctors who will diagnose him based on that, because otherwise, it's 5 weeks of eating gluten before the test. The reason he may need it? Schools and colleges will often require paperwork 'proving' he has it. If he wants in the military, it's the same deal, I believe. And for both of you (if you can find a good doctor to do the same thing), you need something from the doctor sometimes for airlines and other places that may be serving you gluten free foods.

But congratulations on taking control of your health! For myself, I was the one asking for the test - after tons of other diagnosis, like yourself. I ended up finally finding a very good doctor, who essentially specializes in celiac disease, so I feel very lucky in that regard, considering all the celiac related problems I had after going gluten free!

Good luck!

I am trying to decide whether to get "officially" tested for celiac, even though I am 98% sure that's my problem.

My history (in brief!)

2 years ago, I started having major blood sugar lows. At the same time, my 10 y.o. son also experience seizures. We were also having almost identical symptoms. Stomach troubles, mood swings, depression, low cholesterol, electrolyte imbalances. I went to an internal medicine doc, his diagnosis: stress and/or prediabetes (I'm 40). I had NO risk factors for diabetes, and it seemed he didn't hear me when I said my son had the exact same symptoms. I bought a blood sugar monitor and found that out blood glucose was dipping as low as 25 mg/dL. An endocrinologist said I had reactive hypoglycemia, and that there was nothing he could do about it. My son was also diagnosed with reactive hypoglycemia. We both continued to has stomach ailments, mental fog, and mood swings/depression after switching to a vegan diet (although the diet stabilized the reactive hypo).

Why I think I have celiac

I went on a raw food diet (felt great), and on a very vegan, fresh food diet (great!), started to notice bread was making me very, very ill. I got sick for a week after eating bread. I stopped eating it, then made a home made loaf, ate it, and got sick for almost 2 weeks. Mental fog, depression, blood sugar craziness, diarrhea.

My history with physicians

I have been to see a dozen docs, none of whom even mentioned celiac. I feel like I've been run through the medical mill and spent a ton of money with no results. I basically had to diagnose myself with reactive hypoglycemia, and my primary care doc ignored other signs like frequent bowel troubles, low electrolytes (dangerously low a couple of times) and low cholesterol. I came across Celiac by accident, and went on a gluten free diet a week ago. I feel like a different person! I feel quite good, though I think I also have a sensitivity to tannin, because my stomach is getting upset by tea, coffee, red wine (haven't drunk red wine in a year or more).

Should I get a "real" diagnosis?

I have no health insurance, and so going to see a doc and getting officially tested is going to cost me around $600 minimum that I can't really afford. Is it worth getting tested? From what I can tell there aren't any real advantages. I am so tired of the medical profession, and I really don't want to go. However, I guess I am afraid that without a "real" diagnosis this disease won't be taken seriously. Any advice would be gratefully received.

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I am in the same boat. I'm tired of doctors. I've had so many just try to rush me out with a handful of samples and I never feel any better. The only way I have ever felt better is exercise, as close to a natural diet as possible and high-quality supplements.

I would love to have a doctor that would be a partner in my health, but I've decided it's like looking for a needle in a haystack and life is too short to blow all of my money on doctors who don't know anything about what will make me feel better. :(

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Having been in the same boat, and having had a blood test come out neg. and then reacting very well to the gluten-free diet, I would say that sometimes we know our bodies well enough to know what we should and shouldnt be eating.

I would imagine it would be empowering to have a dx because then you have the ''on paper'' factor on your side.

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Hi Steph! Beyond the name, I can identify with quite a bit of your post. I went to so many doctors before figuring out on my own that I am either extremely gluten sensitive or celiac.

I am very fit and eat an extremely healthy balanced diet, yet I was having hypoglycemia, dizziness, severe gas and other gastro issues. I went to a GP, endocrinologist, neurologist, ENT, cardiologist and no one suggested celiacs. One person suggested there might be an allergic component, but that was it. I am most upset that the "top ranked" endo did not think to test me, espcially considering that I am also hypothyroid, but what is done is done. He is no longer my endo. Out of complete desperateness, I experimented with elimination diets and found that I felt so much better with a gluten free diet. In hind sight, the signs were there for a while, and I think somewhere in the back of my mind I knew gluten might be an issue for me.

Anyway, I have realized that I can not tolerate gluten, and even trace amounts make me very sick. While it would be nice to know if it is celiacs or an intolerance, it does not change the fact that I can not eat gluten. The end result is the same. Interestingly enough, when I went gluten free a year ago, my mother did at the same time (without discussing it with me) and completely rid herself of gastrointestinal problems and panic attacks. We also have a cousin with similar issues. There appears to be a strong genetic tendency in my family. I am 99% sure it is celiacs based on a whole host of reasons I am not going to type out, but I am not willing to punish my body with a challenge just for a bunch of expensive tests. At some point, I will do the genetic test, but again it is expensive, and I know my body well enough to know gluten is poison for me. So, I say if you know your body, and it sounds like you do, just move forward with a gluten free diet and be confident about it. ≈

ETA: I also could not drink red wine for a long time and thought I had an intolerance for tannins. I found that I can drink organic and biodynamic red wines though. If you want specific labels, PM me. I also can not eat or drink any coffee or chocolate, have not found a solution for that yet. ;)

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Count me in for a vote against looking for a decent doctor. That said, I do think that you'll need to research the nutritional deficiencies that often accompany Celiac, and make sure that you address any in your diet.

You might be better off spending your money seeing a nutritionist. (I don't know how much that would cost out-of-pocket.) Even in that case though, you'd need to find someone reputable.

Or, you may want to put your money towards probiotics, supplements, and good, wholesome food.

Best

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Wow, your situation is almost exactly like mine. My son is 13 and has experienced seizures and has reactive hypoglycemia. As for myself, I've been going to doctors for 22 years (since I was 11) trying to figure out why my hypoglycemia is so out of control despite following a strict diet. Last week while meeting with an endo, I asked her if my intestinal issues could be related to my hypo and she said, "NOT LIKELY." I asked her if it's possible to have Celiac and she said, "well, stop eating gluten and see how you feel." Great advice because I had actually stopped eating gluten over one month ago, but didn't tell her (although I have since learned of all the hidden places that gluten lurks!!!!). So, I feel like a new person, but I can tell instantly when I've been contaminated because I feel very uneasy in my stomach, get heartburn and a headache.

I also want my son to have a proper diagnosis for school, but I'm sure I'll just pack his lunch anyhow as I don't see the school taking his food choices as serious as I would.

I'm very disappointed with the doctors I've seen so far in Houston, so if anyone has any recommendations I would be grateful. Also, is it possible to get a proper diagnosis via the genetic testing if I'm gluten free? I refuse to eat gluten for 5 weeks just to get a proper diagnosis because now that I've been free of those horrific blood sugar swings for 1 month, I NEVER WANT TO GO BACK!!! I can live without the diagnosis if it means eating gluten again. But, as far as my son, I think he needs a diagnosis for school and college???

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I'm kind of in the same boat...my doctor won't do the tests for me because they are expensive and he says they aren't conclusive. He was just like "You have celiac...eat rice" he still knows nothing. But I feel SO much better off gluten I don't even want to have the tests because I don't even WANT to eat that junk anymore. I've considored getting the tests anyway tho because there are some members of my family who don't believe celiac is a problem and I'm faking...

This is all confusing but I'm getting there....

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I am trying to decide whether to get "officially" tested for celiac, even though I am 98% sure that's my problem.

....

Should I get a "real" diagnosis?

I have no health insurance, and so going to see a doc and getting officially tested is going to cost me around $600 minimum that I can't really afford. Is it worth getting tested? From what I can tell there aren't any real advantages. I am so tired of the medical profession, and I really don't want to go. However, I guess I am afraid that without a "real" diagnosis this disease won't be taken seriously. Any advice would be gratefully received.

The answer is Yes, you absolutely should get tested. For you, and for your children. The hazard of self-diagnosis is you might be wrong, and overlook another serious illness. Or you might be wrong, and unnecessarily subject your son to a life of rigorously avoiding gluten.

And as several others on this thread pointed out, there will be times when you and your son will need an official diagnosis in hand. Airlines and schools are the least of your problem. If you or your son need medical treatment, you need to know - definitively - whether or not you have Celiac Disease. To health care providers there is a significant difference between someone who says, "I have Celiac Desease," and has genetic proof on record, versus someone who simply says, "I don't eat gluten." A definitive diagnosis on record may make a critical difference in treating complications to Celiac Disease, which include autoimmune thyroid failure and certain types of cancer, to diagnosing and treating other related and unrelated illnesses.

There are two labs highly recommended, Prometheus in San Diego and Kimball Genetics in Denver, that use the most current testing technology. Both allow you to request the tests directly yourself. It is worth asking them if they have programs to help patients afford the testing, as more companies are doing this.

I definitely recommend doing it. It will give you a high degree of certainty one way or the other.

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The answer is Yes, you absolutely should get tested. For you, and for your children. The hazard of self-diagnosis is you might be wrong, and overlook another serious illness. Or you might be wrong, and unnecessarily subject your son to a life of rigorously avoiding gluten.

And as several others on this thread pointed out, there will be times when you and your son will need an official diagnosis in hand. Airlines and schools are the least of your problem. If you or your son need medical treatment, you need to know - definitively - whether or not you have Celiac Disease. To health care providers there is a significant difference between someone who says, "I have Celiac Desease," and has genetic proof on record, versus someone who simply says, "I don't eat gluten." A definitive diagnosis on record may make a critical difference in treating complications to Celiac Disease, which include autoimmune thyroid failure and certain types of cancer, to diagnosing and treating other related and unrelated illnesses.

There are two labs highly recommended, Prometheus in San Diego and Kimball Genetics in Denver, that use the most current testing technology. Both allow you to request the tests directly yourself. It is worth asking them if they have programs to help patients afford the testing, as more companies are doing this.

I definitely recommend doing it. It will give you a high degree of certainty one way or the other.

The genetic tests are not diagnostic. They can be a component of diagnosis but are not diagnostic on their own. In addition many labs only test for 2 of the celiac related genes not the full 9 that are associated. One lab that does test for all of the genes is Enterolab but many doctors do not accept their test results. Enterolab can tell you if you are making antibodies up to a year after you are gluten free and can tell you what genes you carry. I found them helpful 5 years after diagnosis when my DD, who was diagnosed by both blood and biopsy, was told she couldn't be celiac because she doesn't have DQ2 or DQ8. If I had been gene tested before diagnosis I would have been told I have RA as my gene DQ9 is considered to be an RA gene here in the US. I don't think it is a coincidence that so many RA patients also have IBS. Anyway gene testing, while interesting, can not diagnose us conclusively.

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Marsha, have you researched Fructose Intolerance? That sounds like that could be your issue...you mention apples and raisins...which have a very high ratio of fructose to glucose. Look into that..Australia has a lot of emerging research on that area...

It's a friggin waste of time. Don't bother. My mom and doc wanted me to see a GI specialist. Saw him last week and he kinda asked a couple times...maybe not directly but "why are you here, i don't have a clue what you're talking about. i only know about celiac disease, i know nothing about food intollerances and other intolerances." he wanted to do a fecal test to check for fat and giardia but i think i decided this morning that i'm not gonna do it due to the cost of the test and they most likely won't find anything.

self diagnosed on everything....intolerance to gluten/dairy/soy/legume/nuts/latic acid/artificial color...and possible problems to raisen, potatoes and apples(unsure yet).

Marsha

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The genetic tests are not diagnostic. They can be a component of diagnosis but are not diagnostic on their own. In addition many labs only test for 2 of the celiac related genes not the full 9 that are associated. One lab that does test for all of the genes is Enterolab but many doctors do not accept their test results. Enterolab can tell you if you are making antibodies up to a year after you are gluten free and can tell you what genes you carry. I found them helpful 5 years after diagnosis when my DD, who was diagnosed by both blood and biopsy, was told she couldn't be celiac because she doesn't have DQ2 or DQ8. If I had been gene tested before diagnosis I would have been told I have RA as my gene DQ9 is considered to be an RA gene here in the US. I don't think it is a coincidence that so many RA patients also have IBS. Anyway gene testing, while interesting, can not diagnose us conclusively.

I saw a doctor for the first time yesterday since self-diagnosing for celiac's 4 months ago. Typically, he was superior and dismissive. When I mentioned my rheumatoid arthritis (which WAS diagnosed "properly" by a physician) he got practically angry, insisting that I didn't have it, that it's a VERY serious disease that needs medication. When I told him that a physician diagnosed me, and that RA is often found in conjunction with Celiac, he insisted over and over that the incidence of that is EXTREMELY RARE. When I mentioned the pain I have in the joints of my little bones when I eat gluten or nightshades as corroborating evidence for my RA, he said "everyone has joint pain" I left feeling extremely frustrated and upset. Why is the idea of what a doctor is, so far from the reality?

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I saw a doctor for the first time yesterday since self-diagnosing for celiac's 4 months ago. Typically, he was superior and dismissive. When I mentioned my rheumatoid arthritis (which WAS diagnosed "properly" by a physician) he got practically angry, insisting that I didn't have it, that it's a VERY serious disease that needs medication. When I told him that a physician diagnosed me, and that RA is often found in conjunction with Celiac, he insisted over and over that the incidence of that is EXTREMELY RARE. When I mentioned the pain I have in the joints of my little bones when I eat gluten or nightshades as corroborating evidence for my RA, he said "everyone has joint pain" I left feeling extremely frustrated and upset. Why is the idea of what a doctor is, so far from the reality?

I got tired of going to doctors also and gave up some time ago. I had unexplained anemia and went to a hematologist for three years, but he never tested for celiacs. I would ask what was causing the anemia and he just said it was "idiopathic". I finally stopped going. I've had an upper GI to test for Crohns (negative) and the Gastroenterologist never seemed to suspect Celiacs. I went to my primary care doctor complaining of anxiety/depression and tried anti-anxiety drugs, and I highly regret it. I finally tested through enterolabs and got a positive result for gluten intolerance and have been gluten-free about six months.

There has definitely been an improvement in brain fog, mood swings and I will feel "normal" for several days at a time now, but then I seem to have some relapse. I don't know if is was related to "withdrawal". I'm planning to go dairy free next to see if that will help improve my symptoms even more. At least I feel there is "hope" now of feeling better which I had really pretty much given up on. I'm glad I did the testing with Enterolab because it confirmed what I thought and helped me to know I was on the right path.

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