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Bellelovegood416

Can I have Celiac even if I test negative?

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Ok, here is the deal. I am 16 now but, as of April last year I started to think maybe gluten was not a good idea for me. My family had given up most of the gluten in the house because my mom had the genes to have Celiac. I would still eat small amounts of it every once in a while but, for the most part I was gluten free for two years. Then my family decided to go back to having gluten in the house to see what would happen. The following day I felt awful and the next day I woke up to find a horrible red itchy blister covered rash in patches all over my face, neck, arms, legs, and abdomen. I honestly freaked out. So me and my Mom decided to take me back off of gluten. It seemed like forever but, in about two weeks my rash is almost gone and I felt a lot better. I  was fine for the next few months till I started to have my next problem. Every once in a while I would get starbucks or chick-fil-a. Gluten free things but, they still sat next to or were made right next to things covered in flour. And, every once in a while after eating something out I would get REALLY sick for a day or two. Then I got my second rash worse than the first time sometime in August. I got put on strong steroids by my family doctor to help with all the swelling and I stayed home from school. I kept getting hit with days of running a fever and barfing. Then in December I went to see an allergist. I was tested for the most common allergys other than wheat because they didn't have it and the only 2 that I reacted  to were dust mites and house dust. So the Allergist told me to eat gluten for 2 days and get my blood drawn for the Celiac pannel. I found out after the two days that twos day was not enough for the testing to come back right and that I had to eat gluten for at least 2 weeks. So I waited till after Christmas and a little past the new year. Then I went back on gluten and ate it for two weeks. Got my blood drawn and waited till they had my results. They came back negative. I was really confused because in these 2 weeks I have been eating gluten I have felt horrible. I have been really moody, tired, had brain fog, stomach pain, feeling sick, migraines, diarrhea, confusion and weight loss (5 pounds). I am completely lost I don't know what to do I want answers.

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1 hour ago, Bellelovegood416 said:

Ok, here is the deal. I am 16 now but, as of April last year I started to think maybe gluten was not a good idea for me. My family had given up most of the gluten in the house because my mom had the genes to have Celiac. I would still eat small amounts of it every once in a while but, for the most part I was gluten free for two years. Then my family decided to go back to having gluten in the house to see what would happen. The following day I felt awful and the next day I woke up to find a horrible red itchy blister covered rash in patches all over my face, neck, arms, legs, and abdomen. I honestly freaked out. So me and my Mom decided to take me back off of gluten. It seemed like forever but, in about two weeks my rash is almost gone and I felt a lot better. I  was fine for the next few months till I started to have my next problem. Every once in a while I would get starbucks or chick-fil-a. Gluten free things but, they still sat next to or were made right next to things covered in flour. And, every once in a while after eating something out I would get REALLY sick for a day or two. Then I got my second rash worse than the first time sometime in August. I got put on strong steroids by my family doctor to help with all the swelling and I stayed home from school. I kept getting hit with days of running a fever and barfing. Then in December I went to see an allergist. I was tested for the most common allergys other than wheat because they didn't have it and the only 2 that I reacted  to were dust mites and house dust. So the Allergist told me to eat gluten for 2 days and get my blood drawn for the Celiac pannel. I found out after the two days that twos day was not enough for the testing to come back right and that I had to eat gluten for at least 2 weeks. So I waited till after Christmas and a little past the new year. Then I went back on gluten and ate it for two weeks. Got my blood drawn and waited till they had my results. They came back negative. I was really confused because in these 2 weeks I have been eating gluten I have felt horrible. I have been really moody, tired, had brain fog, stomach pain, feeling sick, migraines, diarrhea, confusion and weight loss (5 pounds). I am completely lost I don't know what to do I want answers.

2 weeks isn't usually enough time to eat gluten to have it show in large enough  quantities in a blood test.  The recommended amount of time, by Celiac doctors, is 12 weeks.

 

"For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten."

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 

Edited by kareng

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Next time you get the rash, if it is DH you can go to a dermatologist, they will take a biopsy on a clear spot next the the lesion and check it for antibodies....NOTE I  do not get DH as a symptom I am quoting and commenting on info I picked up.

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If you know you are getting sick from ingesting the gluten, I recommend a colonoscopy. I tested negative in the blood tests as well but when my colonoscopy was done, they confirmed on the spot that I had celiac. The blood testing is not always effective for everyone. 

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6 hours ago, Riya said:

If you know you are getting sick from ingesting the gluten, I recommend a colonoscopy. I tested negative in the blood tests as well but when my colonoscopy was done, they confirmed on the spot that I had celiac. The blood testing is not always effective for everyone. 

Usually, Celiac is diagnosed by an endoscopy not a colonoscopy.  It's possible the colonoscopy goes as far as the far end of the small intestine, but not always. 

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4 hours ago, kareng said:

Usually, Celiac is diagnosed by an endoscopy not a colonoscopy.  It's possible the colonoscopy goes as far as the far end of the small intestine, but not always. 

My apologies, you are correct. I did have an endoscopy. 

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On 1/31/2018 at 12:07 PM, Bellelovegood416 said:

I was really confused because in these 2 weeks I have been eating gluten I have felt horrible. I have been really moody, tired, had brain fog, stomach pain, feeling sick, migraines, diarrhea, confusion and weight loss (5 pounds). I am completely lost I don't know what to do I want answers.

I think wheat allergies are fairly common.  It might be a good idea to get tested for that first if it is easier. 

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I have VERY specific reactions to gluten so we know I am gluten sensitive. I had the endoscopy test for celiac's and it came back negative.  However, I had already been gluten-free for 4 years at that point, and my rheumatologist said that likely affected the results (my gastroenterologist ordered and performed the test). My rheum doctor is certain I have celiac's but doesn't want to put me through the pain of eating gluten for 8-12 weeks for a more sensitive test since we know I react painfully to it. With the rest of my rheumatological symptoms he was confident to diagnose me with celiac's even with the negative test. You very well could have it too, but since there's no treatment other than a gluten-free diet there's no point in putting your system through the pain of eating gluten for more tests when it wouldn't change your life having a definitive diagnosis anyways. I would just say avoid gluten moving forward and move on with your life.

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