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Testing Show Not Neg

Sheloveshim

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Sheloveshim Newbie
Sheloveshim
Posted

I am new here and have a few questions I recently seen my dr who did a test for celiac and some other tests I think for dairy she said I am not negative but the numbers are low that a gastro dr would call her crazy for a referal so she mentioned staying off gluten and wheat also dairy which I have been for about three weeks and feel great I have a few accidents which are horrible. My question is before the testing I didn't eat too much dairy I have a 2 1/2 year old who still nurses a few times a day and has reacted since birth to dairy so I cut out 99 % of dairy and I also have a 3 month old who is only nursing and reacted to dairy. I also maybe ate big amounts of gluten (bread ect) maybe once or so a week would the lack of me eating these thing cause a neg result? I was also asked by a dentist about 10 years ago to get tested for celiac which I went off gluten for 3 months then was tested which came up neg. My symptoms seemed to have come on stronger since the birth of my son three months ago but looking back I had them through the entire pregnancy. Should I go back on gluten for a while to test again? I am worried I have had this along time and worried for the damage it might have caused also my liver enzymes have been high for at least 3 years and my gall bladder has caused problems for the same time. I also think my mother had celiac but she passed away from a heart problem and my father might have had too but he passed away from non hodgkins lymphoma so I can't ask them. I want to feel better but I want I guess validation and not to feel like a crazy person.

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GottaSki Mentor
GottaSki
Posted

Welcome!

First - you are not imagining your symptoms. Second - you are not the first person to know there may be a problem with gluten so remove or "mostly" remove gluten at different periods in their life. Pregnancy and nursing can play havoc with more than just hormones and can cause the symptoms of Celiac Disease to worsen.

If you want to pursue a diagnosis, you should go back to eating gluten. You don't have to go overboard - a slice of gluten containing bread is sufficient.

I would like to address your physician's statement that your tests are NOT "negative". If this is the case, that would mean that one or more were "positive". You need to obtain hard or electronic copies of your test results. Any positive - even weak or slight should be referred to a gastroenterologist. False positive is VERY RARE conversely it is absolutely possible to have Celiac Disease or Non-Celiac Gluten Intolerance with negative blood work. Feel free to post your numbers here...we can help interpret them for you.

The process to diagnose Celiac Disease can be extremely frustrating so it is important to point out that you can completely remove ALL sources of gluten for a period of 3-6 months to monitor improvement in symptoms. In fact, if you do pursue more testing and the results are negative - it is best to complete an elimination trial because eliminating gluten is the only test available for Non-Celiac Gluten Intolerance.

For now - obtain written copies of your blood work and take some time to consider how much you'd like to have an official diagnosis. Should you decide to go forward, start eating gluten again and let your doctor know that you want to be referred to gastroenterology based on your symptoms. You may also want to research what GI specializes in Celiac near you. One way to do this is contact a local celiac support group.

Hang in there :)

mushroom Proficient
mushroom
Posted

Just to be clear on one thing -- removing gluten from your diet and then getting tested practically guarantees a negative result because the tests measure antibodies to gluten and your body does not make these if there is no gluten present. You most likely react to dairy because gluten damages the part of your small intestine that makes the enzyme to digest milk sugarrs; without that enzyme dairy just ferments and is not digested.

Also, childbirth can be a trigger for celiac activation.

You are not crazy, you are most likely celiac which can tend to drive people around the bend if they can't get a diagnosis. :) It could be that your testing numbers fall in the equivocal range -- neither negative nor positive. But if you had not been consistently eating gluten that would be expected.

Welcome to the board, and do (as Lisa has suggested) get a written copy of your testing results.

Sheloveshim Newbie
Sheloveshim
Posted
  • Author

Thank you for the help I have decided to go back on gluten and get tested again. I was going to get my results but completly spaced it the dr seemed to get my concerns and didn't doubt my symptoms which was wonderful , but when I came back for the results she asked if I lost weight not a concern for me I just had a baby but all but 5 lbs of baby weight gone and now my issue is keeping weight on since I am nursing two I can't seem to eat enough. I have also had this rash all over that itches from my hair to feet with only tiny red bumps that break open bleeding a little the Drs have said it was kp but I don't know also my face on my checks have pimple like painful and itchy does it sound like dh? Also my arms and chest have red blood blister looking spots I will post my results when I get them thank you again for the help

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