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nikki182

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nikki182 Rookie
nikki182
Posted

I'm new to this and could use some help. I've been sick for the last two years, and the ten or so doctors I've gone to can't find anything wrong with me. Through my own research, and the help of a knowledgeable aunt with diagnosed celiac disease, I've become convinced that I have celiac disease. I had the Prometheus bloodtests done and the antibodies came back negative and the genetic test showed that I had one of the markers. I decided to go on a gluten-free diet and felt a noticeable improvement within the first two weeks. The other night I went out for sushi, not thinking about there being wheat in the soy sauce (yes, i'm an idiot). :( I felt incredibly sick afterwards and this has convinced me even more that gluten could be the cause of my suffering.

My doctor can't explain to me what my test results mean. Can I assume I have an intolerance to gluten when the antibody tests were negative? Also, I was wondering if it's important to get an "official" diagnosis on my medical records. I know that the biopsy is the gold standard for diagnosis but I'm not thrilled at the idea of this or of going off my new diet for any period of time. I just want to get back to living a somewhat normal life!

Thanks for any help!!! :D

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Ursa Major Collaborator
Ursa Major
Posted

Well, instead of thinking you're an idiot, look at it as a test. It proved that gluten is a definite problem. That's what my doctor said when I ate something that made me awfully sick within a month of being on the diet. It confirmed that gluten is a huge problem and needs to be avoided.

If you have an aunt with confirmed celiac disease, you have one of the genetic markers, and you feel much better on a gluten-free diet and get really sick when eating gluten, you have your answer. Unless you feel that you need an 'official' diagnosis, there is no need to EVER purposely eat gluten again.

I don't have an official diagnosis either. My doctor agrees that it would be stupid to make myself seriously ill again just for testing (I wished all doctors would be as sensible as her).

So, my advice is: Keep up the good work and enjoy your newfound health!

And you know, we all slip up now and then, it is impossible to always catch our mistakes before we make them. Especially at the beginning. We're all human, that doesn't make us idiots (even if we feel like we are at times :blink: ).

nikki182 Rookie
nikki182
Posted
  • Author

Thanks for your advice! I don't personally feel a need for an official diagnosis. I couldn't think of any reason why self diagnosis might come back to haunt me down the road, but figured I would ask. Even if I don't actually have celiac disease, this gluten-free diet is forcing me to eat much healthier, which can't be a bad thing. :D

Guest nini
Guest nini
Posted

sweets... you don't need any official dx, and as I'm famous for saying, you don't need a Dr.s permission to be gluten-free. If you feel better gluten-free than by all means do it. My daughter does not have a positive dx of Celiac, but she responded so miraculously to the gluten-free diet that her Dr.s couldn't argue with success... so in her charts they just put "gluten intolerant" and that is sufficient.

Guest cassidy
Guest cassidy
Posted

If you don't feel you need an official diagnosis, then you don't need one. I didn't get one either. When I go to a new doctor now I just tell them I have celiac and I don't go into if/how I was tested or anything else. My doctor even gave me a note for work so they will give me special food during my business trips. So, if you ever need something like that I would think you could still get it even if you don't go through the testing.

Glad you figured out what was wrong with you.

Mayflowers Contributor
Mayflowers
Posted

If you still would like to know, get the Enterolab gluten intolerance test. It's a stool specimen test. See my results --- 10 or higher means there is gluten intolerance. I did the test so I will stay on my eating plan. It would be too easy for me to cheat if I didn't have the numbers in my face to remind me I'm doing damage to my body if I eat gluten...or milk....or soy....or eggs.. :( or open a window. (my son jokingly said that)

pat e Rookie
pat e
Posted

I have an colonscopy and endoscropy with a biopsy in early August 06. The biopsy came back moderate to servere celiac disease. The gi doctor said it was only in a small area of the jejunum and it may not get worse. I do not have diarrhea and wt loss 35 # was intentional in 3 years per exercise and cutting back on calories. I have bowel movements daily formed stool. My only symtpoms was iron deficiency anemia.The doctor said I do not have to follow a gluten free diet as I have no gi symptoms

Two years ago I had an endoscopy with biopsy and they were negative. I am major surgery for the removal of my thyroid for cancer in Oct 05. It was in situ and no radiation or chemo was needed. During these two years I have been taking anywhere from 3-6 grams. of Niaspan (sustained release niacin). I have genetic hyperlipidemia Type II a and my endocrinologist wants me to take at least 5 grams. It does get my cholesterol and ldl level down but with a price. Now I wonder if it can be related to celiac disease.

Lately I have only been able to get up to 3 grams with much gi discomfort.-pain below my diaphgam. When I get this gi distress I do not want to eat, I stop my meds and it gets better in about two day. I read that the niaspan get absorped in the intestine and stomach. I have been negative for ulcers and polyps. If I eat roll made with wheat I have no gi disturbances.

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hannahsue01 Enthusiast
hannahsue01
Posted
I have an colonscopy and endoscropy with a biopsy in early August 06. The biopsy came back moderate to servere celiac disease. The gi doctor said it was only in a small area of the jejunum and it may not get worse. I do not have diarrhea and wt loss 35 # was intentional in 3 years per exercise and cutting back on calories. I have bowel movements daily formed stool. My only symtpoms was iron deficiency anemia.The doctor said I do not have to follow a gluten free diet as I have no gi symptoms

Two years ago I had an endoscopy with biopsy and they were negative. I am major surgery for the removal of my thyroid for cancer in Oct 05. It was in situ and no radiation or chemo was needed. During these two years I have been taking anywhere from 3-6 grams. of Niaspan (sustained release niacin). I have genetic hyperlipidemia Type II a and my endocrinologist wants me to take at least 5 grams. It does get my cholesterol and ldl level down but with a price. Now I wonder if it can be related to celiac disease.

Lately I have only been able to get up to 3 grams with much gi discomfort.-pain below my diaphgam. When I get this gi distress I do not want to eat, I stop my meds and it gets better in about two day. I read that the niaspan get absorped in the intestine and stomach. I have been negative for ulcers and polyps. If I eat roll made with wheat I have no gi disturbances.

Ummm.....I am sure other people will reply to this as well. If you were diagnosed with mod to severe celiac my understanding is that regardless of symptoms or lack of you will be doing damage to yourself. I would be questoning your doctors knowledge if he is telling you that you can eat gluten. As far as your new symptoms it could be your meds or it may not.

Nevadan Contributor
Nevadan
Posted

Regarding an "official diagnosis", you might want to consider the future impact on being able to get affordable health insurance should you ever need to purchase your own as opposed to an employer's group policy. Most insurance companies consider celiac a pretty big negative and will either not insure you at all or will charge more exorbinant rates.

My opinion is that if you have proof by dietary experimentation, why bother with an "official dx". As someone else said, "you do not need a doctors permission to be on a gluten-free diet".

AndreaB Contributor
AndreaB
Posted
The doctor said I do not have to follow a gluten free diet as I have no gi symptoms

I don't know where your doctor is getting his/her information. You need to be totally gluten free for life or you will continue damaging your intestines or other parts of your body. If you really want to see the damage, do the enterolab stool test.

Nikki,

I would also recommend the enterolab stool test for you too, if you need/want to see the numbers. The stool test can catch the antibodies much sooner than a blood test will. You may not have enough damage to show up on the blood test but still have an active intolerance/sensitivity.

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num1habsfan Rising Star
num1habsfan
Posted

I would try to get an actual test done if I could, but kinda like in your case, they doctors finally just said to try the diet, and it helped -- that was my method of diagnosis.

~lisa~

eKatherine Apprentice
eKatherine
Posted
I have an colonscopy and endoscropy with a biopsy in early August 06. The biopsy came back moderate to servere celiac disease. The gi doctor said it was only in a small area of the jejunum and it may not get worse. I do not have diarrhea and wt loss 35 # was intentional in 3 years per exercise and cutting back on calories. I have bowel movements daily formed stool. My only symtpoms was iron deficiency anemia.The doctor said I do not have to follow a gluten free diet as I have no gi symptoms

Two years ago I had an endoscopy with biopsy and they were negative.

If you've had two endoscopies done two years apart, and the first one shows you healthy while the second one shows you with "moderate to severe celiac", that means you're going downhill fast. You need to go gluten-free immediately. Wouldn't hurt to look for a new doctor, either.

Mayflowers Contributor
Mayflowers
Posted

I think the problem is that because you don't have any GI symptoms, you think your ok. If you did some more research on Celiac disease you'd see it doesn't always manifest as diarrhea or abdominal pain and cramping. It will slowly destroy your body by causing arthritis, auto-immune diseases, diabetes, cancer, depression, anxiety, and believe it or not weight gain.

I am gluten intolerant not to mention, egg, soy, dairy too. I didn't have costant GI symptoms, only recently I started getting acid reflux too much and I noticed it was after eating wheat. I thought I had an allergy so I got a blood test and it was negative.

I had really bad osteo-arthritis of both hips and had to have a bilateral hip replacment at 48 years old. I have arthritis in my hands and knee also. The only other symptoms were, constant, anemia, and my sinus was always giving me problems with infections and stuffiness. If your immune system is compromised, you'll get sick more often.

nikki-uk Enthusiast
nikki-uk
Posted
I think the problem is that because you don't have any GI symptoms, you think your ok. If you did some more research on Celiac disease you'd see it doesn't always manifest as diarrhea or abdominal pain and cramping. It will slowly destroy your body by causing arthritis, auto-immune diseases, diabetes, cancer, depression, anxiety, and believe it or not weight gain.

PAT e

I'd have to agree with Mayflowers.

My husbands main symptoms in the years leading up to his dx of celiac disease were arthritis.

It wasn't until he was bedridden with fatigue and in terrible pain with his joints that the GI symptoms kicked in.

Unfortunately-the arthritis has left it's mark-damage in some of his joints,he also has osteoporosis.

Both of these in my opinion would have been avoided had he known he had celiac disease and followed a G.F diet.

I would say consider yourself lucky you've been diagnosed before irreversible damage occurs somewhere in your body.

Although my husband is much better than he was after 2 years G.F,I don't believe he will ever have 100% health back.

You're doctor was again in my opinion,completely and utterly wrong to say as you have no GI symptoms you can continue to eat gluten.

If it's ok to eat gluten,then why have you got villous atrophy of your small bowel???

nikki182 Rookie
nikki182
Posted
  • Author

You guys have answered my question; I'm not going to worry about the diagnosis. For some reason I was thinking it would be a plus to have it on my medical record, but that's a good point about insurance. I'm going to have to get my own starting next year and other than the celiac I've been really healthy all my life which will be a help for that. I'd say I'm feeling about 20x better since I started the gluten-free diet and that's good enough for me. =)

pat e,

I know I'm new to this but I know that even if you aren't experiencing symptoms, damage is being done to your body if you have celiac. My main symptom was fatigue and also joint pain without any swelling. I got a repeated diagnosis of depression from every doctor I saw but I knew inside that I was experiencing a physical problem. I also had really bad brain fog, and that mixed with how tired I was forced me to take a year long leave of absence from school. I didn't have any g.i. symptoms at all until pretty recently. Like everyone else is saying, it would be a good idea for you to find a new doctor. Although going gluten free can be an inconvenience I really don't think it would be worth it to risk doing lots of irreversible damage to your body by not doing the diet.

Also, about your symptom of pain below the diaphram, I got that all the time and it has gone away since I started the gluten-free diet. I accidentally ate gluten one night and that was one of the first symptoms to return.

Good luck with everything!

Mayflowers Contributor
Mayflowers
Posted

"Pain below the diaphram" That was my reason for suspecting wheat intolerance. I got pressure, pain and gas with a lot of burping when I ate wheat, mainly whole dense wheat bread.

dawnd Newbie
dawnd
Posted

My son has been gluten free for 1 year now, can he still have the Enterolab test without eating gluten after this long?

Dawn

I don't know where your doctor is getting his/her information. You need to be totally gluten free for life or you will continue damaging your intestines or other parts of your body. If you really want to see the damage, do the enterolab stool test.

Nikki,

I would also recommend the enterolab stool test for you too, if you need/want to see the numbers. The stool test can catch the antibodies much sooner than a blood test will. You may not have enough damage to show up on the blood test but still have an active intolerance/sensitivity.

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dawnd Newbie
dawnd
Posted

I understand wanting as much of a definative diagnosis as possible. My son is 2 1/2 and can't tell me how he is feeling and who knows what is making a 2 year old act fussy day to day. We just went cold turkey on the gluten when he wasn't progressing developmentally (he has Downs too). He has been off gluten for 1 year and I am ready for a test that tells me he has to be on this diet. When he first came off the gluten I saw big changes. Blood tests for food allergies showed no allergy and blood test for Celiac was borderline positive. I wonder if the Enterolab test would be accurate if he had it when he has been off gluten for 1 year.

I am new to this whole forum thing. Forgive me for asking the same question twice in a row.

AndreaB Contributor
AndreaB
Posted
I understand wanting as much of a definative diagnosis as possible. My son is 2 1/2 and can't tell me how he is feeling and who knows what is making a 2 year old act fussy day to day. We just went cold turkey on the gluten when he wasn't progressing developmentally (he has Downs too). He has been off gluten for 1 year and I am ready for a test that tells me he has to be on this diet. When he first came off the gluten I saw big changes. Blood tests for food allergies showed no allergy and blood test for Celiac was borderline positive. I wonder if the Enterolab test would be accurate if he had it when he has been off gluten for 1 year.

I am new to this whole forum thing. Forgive me for asking the same question twice in a row.

If the blood test was borderline positive then he would need to be gluten free for life. The antibodies in the blood come up after the antibodies in the intestine. You would need to call or email enterolab and see if their test would still be accurate for one so young after 1 year gluten free. You could still do the dairy through enterolab if you want to check that.

Ruth52 Newbie
Ruth52
Posted

I haven't had an official diagnosis, but when I need to ask questions about any food I am about to eat I say I am celiac - it just makes life easier.

But I look at it this way, if someone told me they were vegetarian I wouldn't expect them to give me an explanation about their diet. I wouldn't expect them to produce results from a test that showed that they couldn't eat meat.

So don't stress about an offical diagnosis unless you really want one. Eat what is right for you.

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