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edonnelly69

Negative Blood

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I have been having what I refer to as "stomach issues" for quite a few years now. They have always been managable up until about a year ago ( I had stomach surgery done a year ago). I am lucky to go to the bathroom once a week, always cramping and bloated, I least one week out of the month I have so much pressure that it hurts just to sit down. At night time you would think there was a volcano erupting in my stomach, which goes on all day long but seems to be amplified at night time. I went to my primary and explained what was going on, she did some blood work and told me to take a stool softner. That helped sometimes but not all the time. The blood work came back and she said I was deficient in Vitamin D, which I could not understand. I live in Florida and I run outside 5 days a week as well as play tennis about 5 days a week...I was not short on the sun. Now in the past year I have not been running as much, just can't seem to find the energy and when I do run I just don't seemto have the endurance or stamina that I used to have...which is a shame because I love running.

I finally broke down last week and made an appt for the Borland Groover Clinic, when the dr. mentioned blood tests for Celiac I have to admit that I thought nothing of it until I decided to take to the web and see what I was actually being tested for. Imagine my shock when I read about Celiac and the symptoms, it was like they were talking about me.

Well my blood work came back negative, this has thrown me for a loop. I am scheduled next week for a colonoscopy and I called the nurse to get a copy of my blood work....not that I really know what those results mean but I will take it to the web and do some research. I was going to try and make the change to my diet but the nurse said not to that I should wait for further testing.

Just coming to this forum has affirmed for me even more that I could be dealing with Celiac.

I am feeling kind of confused as I was thinking that this was it for me, I thought I had a diagnoses and now it feels like I am back at square one. Any words of advice would be appreciated.

Oh on a side note... I am Northern European, born and raised in Scotland..Came to the US in 1992. I read that Celiac is prevelant in people from Northern Europe.

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In your reading you may have seen that many people receive false negatives (20%). Are you sure a full celiac panel was run? If they didn't test your total serum level the results are inconclusive. Also, if the diet ends up working for you, I wouldn't be too concerned with a strict diagnosis.

You do need to stay on a gluten diet if more testing will be run (like a biopsy), but from the sound of your symptoms, I'd say as soon as you're done testing just do a trial of the gluten-free diet and see if it helps. (And remember to be strict and give the diet time - it may get worse, or at least, kind of hairy and different - before it gets better.)

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Hi! You can post your test results here and the more 'seasoned' members can help you. Also, you said you are having a colonoscopy(bottom side), are you also having an endoscopy(top side)? From what I understand, you need to have the endoscopy so they can do a biopsy of the small intestine. After you get all your testing done, you can start gluten free and hopefully start to feel better.


Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.

2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.

Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.

So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!

My adult daughter also has been helped by eating gluten-free.

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Hi! You can post your test results here and the more 'seasoned' members can help you. Also, you said you are having a colonoscopy(bottom side), are you also having an endoscopy(top side)? From what I understand, you need to have the endoscopy so they can do a biopsy of the small intestine. After you get all your testing done, you can start gluten free and hopefully start to feel better.

As soon as I receive my test results I will post them. When I called the nurse today to request the blood results and tried to explain to her that the symptoms of this disease are what I am having she kind of sounded like I was maybe reading too much on the web. I told her that I had read so much because it just seemed like this is what was happening with me. All the symptoms that I had mentioned at my dr. visit and then when I read up on it and seen other symptoms that I had no idea were related to this. I tried to explain to her in the last year I have had 2 root canals with crowns and 2 filling due to my teeth chipping away and she shrugged it off. She told me not to cahnge my diet and wait for the colonoscopy, she did not mention any other testing but told me not to change my diet as they might need to do a biopsy.

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The nurse is right about staying on your current diet until all testing is done. Even if your biopsy is negative, you can still trial the gluten free diet.


Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.

2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.

Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.

So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!

My adult daughter also has been helped by eating gluten-free.

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The nurse is right about staying on your current diet until all testing is done. Even if your biopsy is negative, you can still trial the gluten free diet.

I feel kind of disappointed because the symptons are not easy to live with and when the dr. mentioned Celiac and I started to read up on it.....I thought wow....this is me, I am finally going to get some help with this. I will wait for the colonoscopy and see what the results are from that. As soon as the dr. sends me my blood results I will post them and hopefully get some feed back from that. Thank you so much!

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A colonoscopy is not a test for celiac. You need an endoscopy to test for celiac. Call your GI doctors office and ask if they can schedule both procedures for the same time. If they only want to do one test at a time I would opt for the endo first personally. Do stay on gluten until the endo and biopsies are taken.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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A colonoscopy is not a test for celiac. You need an endoscopy to test for celiac. Call your GI doctors office and ask if they can schedule both procedures for the same time. If they only want to do one test at a time I would opt for the endo first personally. Do stay on gluten until the endo and biopsies are taken.

I will do that, thank you.

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