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Pretty Upset Right Now...


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9 replies to this topic

#1 crissy82

 
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Posted 22 May 2012 - 10:21 AM

So I had a blood test last week for Celiac Disease. I just heard back from my doctor. It was negative. I was eating gluten free for about a month up until about 2 weeks before the test. Then I started stuffing myself with gluten again. I know they say you need to be eating gluten for 4 weeks or your test could come out negative. But I thought if I ate as much gluten as possible for 2 weeks it might equal out to 4 weeks.

I have so many unexplained symptoms that all point to Celiac. This has been going on for over 4 years now!!

I have horrible stomach pain, bloating and cramps. I have diarihhea almost every day. My stools are always light colored (Sorry TMI). I have had a colonoscopy and endoscopy that came back free and clear of cancer and colilitis. I have GERD.

I get headaches at least 3 or 4 times a week. I have horrible anxiety and brain fog. I have a couple of swollen lymph nodes that are not cancerous. I read a post on here that some others have had this. And they went away after being gluten free.

I don't sleep well. I have infertility. My husband and I have been trying to have a baby for 4 years now. No luck with that. And I know it is me because he has a 6 year old daughter from a previous relationship.

I have swelling in my knees sometimes. And they hurt. I get joint pain in my wrists, ankles and neck a lot. I get itchy sores on my scalp. I have lost a lot of hair. I am a 30 year old female. I shouldn't be losing so much hair.

I was hoping that my doctor was finally on the right road. That I would finally have an answer to why I have been feeling so horrible for over 4 years. Now I am just depressed and more upset because I still don't have an answer. :(

Any suggestions? This is so frustrating.
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#2 tuxedocat

 
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Posted 22 May 2012 - 10:27 AM

That exact thing happened to me. My doctor actually told me to go gluten free... BEFORE MY TEST. Going gluten free before your test may cause you to have a negative test. I had what appeared to be a classic case of DH but they didn't biopsy it. In fact, ever since I've gotten my thyroid diagnosis, any time I have a health issue then it gets ignored if it isn't related to my thyroid. I almost wish I could start over completely fresh with new doctors with no medical history.

After my negative blood test, he threw celiac in the scrap heap and didn't look any further. Now I'm on county insurance and am stuck with whatever the doctors want to do.

I treat myself as if I do have celiac and stay gluten free.

Hang in there, there are a lot of people who are in our same boat.
  • 0
2007 - dx'd with Graves' Disease
Suspected DH (no biopsy)
Tested negative for celiac (after gluten free two months)

2012 - Gluten free again after suggestion it might help my thyroid symptoms. Many strange one-off symptoms cleared up. Brain fog gone.

#3 dani nero

 
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Posted 22 May 2012 - 10:29 AM

Could you suggest to the doc that you keep eating gluten for a few more weeks, and then redo the test? There are other ways to test for celiac too. If you have a rash (dermatitis herpetiformis) you can get it biopsied, or they could search for damage in your intestines.

Then there is the possibility you might want to keep being undiagnosed if you don't really need an official diagnosis.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#4 MitziG

 
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Posted 22 May 2012 - 10:49 AM

While you were eating gluten free, did you feel better?

If so, then you have your answer. You do not need a dr to agree with you.

Being gluten-free could have messed up the test, or he may not have done a full panel. OR, you might not have celiac.

Doesn't mean you are at square one. Gluten intolerance would also cause the same symptoms, and the treatment is the same- no gluten. If it happens you are gluten intolerant instead of celiac, then good for you. Then you DONT have an autoimmune disease. That really is GOOD news!
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#5 KMMO320

 
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Posted 22 May 2012 - 11:44 AM

I feel like you should try going Gluten free again anyway and see how you feel. Like someone above said, if you feel better, then there is your answer.

I went to the GI doc today and she scheduled me for a full blood work and an endoscopy. She said if nothing shows up she still wants me to go gluten-free for a while and see what happens. I was really happy she said that. Celiac can;t be treated, there is really nothing a dr can do except tell you to eat gluten-free, so it cant hurt to just do it.

My Dr said to keep eating gluten until my Endoscopy but to start going gluten-free immediatley after. So a week and a half.

Good luck, you should at least try it out! I feel like even with all the medical advances as far as celiac disease goes, they still have a WAYS off before figuring out a more accurate way of diagnosing.
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#6 anabananakins

 
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Posted 22 May 2012 - 05:53 PM

I stuffed myself with gluten for three months and still tested negative. Unless you want to keep eating gluten for another few months to re-do the testing, you might as well accept that you're not going to get an official diagnosis now, but you can go gluten free anyway. Heck, you could stuff yourself with gluten for years and still test negative, it doesn't mean it's not bad for you. There are heaps of us here who tested negative but who removed all gluten from our diets and felt amazingly better for it.

There are a lot of threads about this. The testing sucks, there are so many people it seems to fail. But going gluten free is nothing like as bad as it seems before you've done it - and the benefits can be amazing. Just make sure you decide if you want to pursue the testing or not as once you go gluten free you can't have the testing done unless you do a long gluten challenge.
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#7 tuxedocat

 
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Posted 22 May 2012 - 09:37 PM

My nutrition teacher was quite knowledgeable about celiac and she said that people could test negative for several years before testing positive. And this is even while eating gluten. She also said that many people who were "gluten intolerant" but negative for celiac, eventually were positive for celiac via one of the tests.
  • 0
2007 - dx'd with Graves' Disease
Suspected DH (no biopsy)
Tested negative for celiac (after gluten free two months)

2012 - Gluten free again after suggestion it might help my thyroid symptoms. Many strange one-off symptoms cleared up. Brain fog gone.

#8 beachbirdie

 
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Posted 23 May 2012 - 12:32 AM

So I had a blood test last week for Celiac Disease. I just heard back from my doctor. It was negative. I was eating gluten free for about a month up until about 2 weeks before the test. Then I started stuffing myself with gluten again. I know they say you need to be eating gluten for 4 weeks or your test could come out negative. But I thought if I ate as much gluten as possible for 2 weeks it might equal out to 4 weeks.

I have so many unexplained symptoms that all point to Celiac. This has been going on for over 4 years now!!

I have horrible stomach pain, bloating and cramps. I have diarihhea almost every day. My stools are always light colored (Sorry TMI). I have had a colonoscopy and endoscopy that came back free and clear of cancer and colilitis. I have GERD.

I get headaches at least 3 or 4 times a week. I have horrible anxiety and brain fog. I have a couple of swollen lymph nodes that are not cancerous. I read a post on here that some others have had this. And they went away after being gluten free.

I don't sleep well. I have infertility. My husband and I have been trying to have a baby for 4 years now. No luck with that. And I know it is me because he has a 6 year old daughter from a previous relationship.

I have swelling in my knees sometimes. And they hurt. I get joint pain in my wrists, ankles and neck a lot. I get itchy sores on my scalp. I have lost a lot of hair. I am a 30 year old female. I shouldn't be losing so much hair.

I was hoping that my doctor was finally on the right road. That I would finally have an answer to why I have been feeling so horrible for over 4 years. Now I am just depressed and more upset because I still don't have an answer. :(

Any suggestions? This is so frustrating.


Do you have a list of the tests your doctor did? And what the actual results were?

If you are really needing that diagnosis, you can go back on a gluten-filled diet for a longer period and get the tests without having your doc order them. I use HealthcheckUSA. They are currently charging $200 for a very good panel which includes both the IgA and IgG versions of TtG and Deamidated gliadin peptides. It also includes the anti-EMA and total serum IgA.

Or, decide that you are gluten intolerant and stick with the gluten-free diet. You felt much better on the diet, and thankfully you don't need permission to follow a gluten-free plan.

Eating twice the gluten for half the time does not speed up any damage that might be initiated. Some people don't start having damage for a very long time. And a lot of people have a rapid decline in antibodies when they remove gluten from their diet. It kind of surprised me to run across that in all my reading.

It is so very frustrating to feel ill and not be able to find answers. :(
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#9 Cara in Boston

 
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Posted 23 May 2012 - 05:37 AM

My blood test went from very positive to normal after being gluten free for only 10 days. My son was still positive after 6 months gluten free. It took him a full year to finally be in normal range. It is different for everyone.

My doctor told me that you need to be eating a regular diet for 4-6 months before being tested - 2 weeks is absolutely not enough.

Your symptoms are EXACTLY what I was experiencing (except for the infertility part . . . my symptoms started after the birth of my last child)

Since I didn't want to continue eating gluten just to get another positive test (it was very clear to me that I felt much better gluten free) and since my son was diagnosed with Celiac Disease, my doctor "diagnosed" me with gluten intolerance. Whatever -

It has been a year since starting the gluten-free diet and I feel normal. Hair has grown back, anxiety is gone, GI issues have resolved. Headache maybe once a month, etc. etc. I feel like I did 10 years ago . . .

If you don't need an actual "diagnosis" from your doctor, just try the diet (and give it a chance - like 3 months) and see if you don't feel great.

Cara
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#10 krohde73

 
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Posted 23 May 2012 - 11:39 AM

That exact thing happened to me. My doctor actually told me to go gluten free... BEFORE MY TEST. Going gluten free before your test may cause you to have a negative test. I had what appeared to be a classic case of DH but they didn't biopsy it. In fact, ever since I've gotten my thyroid diagnosis, any time I have a health issue then it gets ignored if it isn't related to my thyroid. I almost wish I could start over completely fresh with new doctors with no medical history.

After my negative blood test, he threw celiac in the scrap heap and didn't look any further. Now I'm on county insurance and am stuck with whatever the doctors want to do.

I treat myself as if I do have celiac and stay gluten free.

Hang in there, there are a lot of people who are in our same boat.


This happened to me as well a year ago! The doctor/specialist told me to go Gluten free and 2 months later told me he was testing me for Celiac's. NEGATIVE!

This year they tested me again after I'd been eating it consistently and whah-lah!

But I would say just continue eating Gluten Free if it made you feel better. Just be sure to take your vitamins so that you don't become deficient, especially Vitamin D. Just don't starve yourself. But I'm not a doctor...just sometimes you gotto do what makes you feel better.
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Kim
Gluten Free since 4/12




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