Negative blood test for celiac

[kjsriter]

I started having a lot of digestive issues and was tested for many things. I tested negative for celiac disease and positive lactose intolerance, fructose malabsorption, and SIBO.  I was put on a low fodmap diet which excluded gluten. When I began to feel better, I tried adding gluten back in and had digestive symptoms return as well as a red bumps on my face with burning and itching and a strange tightness in my throat. A few weeks ago, I went on a vegan diet in an attempt to heal my gut and stopped eating gluten again as well, of course. Recently, I tried eating meat and discovered it gave me the same reaction; digestive discomfort, rash on my face, and terrible tightness in my throat. Has anyone else had issues with this? If I'm negative for celiac, could I have a wheat allergy? Could I have developed an allergy to animal protein because of damage to my gut? Also? I had been eating gluten free for quite some time when my doctor decided to do the blood test for celiac. She told me I only needed to eat gluten for a couple of days before being tested. I've looked around on here and see that many say you have to be back on gluten for 8-12 weeks!

[cyclinglady]

We can not really diagnose you over the internet, but I do sympathize with you!  I can guess about a few things.  You are absolutely right that you can not rule out celiac disease when you were gluten free when your doctor ordered the test.  It is obvious that your doctor is not celiac savvy.  My neighbor is an ER doctor.  Can anyone possibly remember everything from medical school?  Heck no!  He relies on Dr. Google along with his extensive training and years of experience.  You would think your doctor would look up diagnostic procedures for celiac disease.   Ugh!  The 8 to 12 weeks is based on the top celiac doctors and researchers!  

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Some patients can not handle a gluten challenge for 8 to 12 weeks, so sometimes the time is less, but it is never for a few days!  It takes time to build up antibodies in the body.  It takes less time to set off the autoimmune response causing intestinal damage.  Therefore, a gluten challenge prior to an endoscopy is 2 to 4 weeks.  

 Meat allergy?  Possible.  But usually you react to one kind of meat like poultry, fish or pork (not sure what your definition of meat is....).   Maybe, just maybe, you are lacking enzymes (due to SIBO or celiac disease) that allow you to digest meats and other foods (food intolerance).   What tests were given for SIBO or is that just another "guess" by your doctor?

Are you seeing a medical doctor?  What tests were given to determine a lactose intolerance or fructose malabsorption?  

SIBO is not to be taken lightly.  You can have both celiac disease and SIBO and intolerances.  You could have allergies or allergic type reactions (regarding your rash and throat tightening).  You should ask to see an allergist.  

You are obviously ill.  I hope you can find a doctor who can help you!  I would not rule out celiac disease at all!  I wish you well!  

 

[kjsriter]

I saw a GI doc for the FM, SIBO, and lactose intolerance tests and diagnosis. The FM and SIBO were tested by breath tests and lactose by a blood test. I was given Xifaxin for SIBO and my doc was confident that should have fixed me. When it did not, he wanted to do a colonoscopy. I said no. I was at the end if my rope at that point, as well as financially stressed do to all the other testing on my gallbladder, endoscopy to check for ulcers, scans to see if my body was moving the food along fast enough, and my appendectomy not long before that. I am annoyed that no one has bothered to send me to an allergist though.

[cyclinglady]

Okay, at least your GI has ordered some standard tests.  It is too bad that during your endoscopy, he did not take four to six biopsy samples to test for villi damage caused by celiac disease.  And that he tested you for celiac disease when you clearly had been gluten free for some time.  Well, in his defense, he may have tried testing in the hopes that you were still getting gluten into your system via cross contamination. Talk to him/her about remaining gluten free.  A gluten challenge for a celiac disease retest may not be in your best interests right now while you are so sick with SIBO.  

I do not know enough about SIBO to help you.  The rashes you are experiencing may be related to SIBO.  I understand that it is really hard to recover from it.  Patience is critical (same for celiac disease healing)!  Try to stick to the SIBO diet while addressing the lactose and fructose intolerances.  Give it time (like six months) before you switch diets as it sounds like you are desperate and are trying everything!  

PUB MED is a good resource tool regarding SIBO.  

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[kjsriter]

In my GI doctor's defense, it was my regular doctor who tested me for celiac before even sending me to the GI specialist. I can't even say how many times my GI doc kept going back to check to see if I'd been tested for celiac and then noting I was negative with a "hm."  I never told him that I'd only been back on gluten a couple of days before being tested, so he doesn't know. I didn't know that wasn't how it was done until reading up on here. And I have to say that I think my SIBO is a separate issue and made me feel differently than how I feel otherwise, if that makes any sense. But my GI doc did say I should be able to eat whatever I want while being treated for SIBO, which I wasn't entirely confident in, considering everything I read online said differently. The problem with GI conditions, it seems, is that they really don't seem to know a lot about it. My doctor, at least, still seems to be the type who treats one aspect of a whole person rather than looking at more than just the single diagnosis. But this is how it goes for many, I think. I'll keep at this diet and stop cheating (believing I should be able to tolerate gluten since I tested negative, which clearly every time my body tells me otherwise) and give it some time. Thanks for your insight! It's encouraging to talk to real people about these things.

[cyclinglady]

There is so much to be discovered by medical science regarding the human intestinal tract!   Let's face it, it is not a glamorous topic!  The best we can do as non-doctors is to maintain our medical records, read current research that may aid our doctors (they are humans after all)  and continue to advocate for ourselves.  

I wish you well!  Welcome to the forum!  Read the great tips about cross contamination, avoiding processed foods while healing, etc. at "Newbie 101" located under our "Coping" section.  If you are going to be gluten free, then make sure you really are gluten-free!