Negitive Test

[mjackson3]

About 5 years ago I had a horribly itchy rash on my torso, arms and legs. I had a biopsy done and it was diagnosed as Erythema Multiforme. I was put on 100mg a day of steroids, to suppress my immune system that was in overdrive due to an allergic reaction to something. This caused me to gain 30 lbs in 3 weeks. I was than diagnosed with Fibromyalgia and Hashimoto's thyroiditis. In the last three months I started to have service pain in my right side, I had alternating C&D, as well as a list of other systems. I was put through 3 ultra sounds, MRI, and a spiral CT, which showed nothing. I have had numerous blood tests as well as s tests. All of them showing negative. I was sent to a GI doctor who tested me for Celiac, that test was negative as well. I was diagnosed with IBS. My father was told that he had IBS for at least 15 years before they tested him and diagnosed him with Celiac. A week ago I switched to a gluten-free diet, it has helped. My question is should I go back to a regular diet and see another doctor or should I just continue with the gluten-free diet and not worry about an official diagnoses?

[ravenwoodglass]

  mjackson3 said:

About 5 years ago I had a horribly itchy rash on my torso, arms and legs. I had a biopsy done and it was diagnosed as Erythema Multiforme. I was put on 100mg a day of steroids, to suppress my immune system that was in overdrive due to an allergic reaction to something. This caused me to gain 30 lbs in 3 weeks. I was than diagnosed with Fibromyalgia and Hashimoto's thyroiditis. In the last three months I started to have service pain in my right side, I had alternating C&D, as well as a list of other systems. I was put through 3 ultra sounds, MRI, and a spiral CT, which showed nothing. I have had numerous blood tests as well as s tests. All of them showing negative. I was sent to a GI doctor who tested me for Celiac, that test was negative as well. I was diagnosed with IBS. My father was told that he had IBS for at least 15 years before they tested him and diagnosed him with Celiac. A week ago I switched to a gluten-free diet, it has helped. My question is should I go back to a regular diet and see another doctor or should I just continue with the gluten-free diet and not worry about an official diagnoses?

I would continue with the diet for another month or so at least and then if you are still in doubt you can do a short gluten challenge by eating something like cream or wheat or triscuits at least 3 times a day for a week or until your symptoms return. Celiac is often a delayed reaction so it could take up to a week, it is usually 3 days, for the reaction to occur. False negaitves on blood tests are really very common. Also if the result is only one or two points into the positive range many doctors will consider it negative and tell you so. For that reason it can also be helpful to get true copies of your bloodwork.

[mjackson3]

  ravenwoodglass said:

I would continue with the diet for another month or so at least and then if you are still in doubt you can do a short gluten challenge by eating something like cream or wheat or triscuits at least 3 times a day for a week or until your symptoms return. Celiac is often a delayed reaction so it could take up to a week, it is usually 3 days, for the reaction to occur. False negaitves on blood tests are really very common. Also if the result is only one or two points into the positive range many doctors will consider it negative and tell you so. For that reason it can also be helpful to get true copies of your bloodwork.

Thank you very much for responding. I am feeling like I am out here by myself and still with out any answers.

[sneezydiva]

I'm in the same boat as you. I've had a ton of problems over the years, and I started getting horrible digestive symptoms about 4 months ago. The GI has done every test he can including the celiac panel which was negative. I'm waiting the results of an abdominal CT. I plan to post my blood test results when I get my copy, but assuming the CT scan is negative, I plan to go on the diet strictly for 2 months and then challenge it one last time. I've been playing around with the diet for a little over 2 weeks. Just going 48 hours without gluten makes me feel better, and eating it again seems to make me feel worse.

There's only so much you can do. You can't force a doctor to diagnose you. You know how you feel better than anyone, and in your case you have a diagnosd celiac in your family. I don't have that, though I strongly supect my grandmother was celiac. But at least, I have the peace of mind knowing there isn't some other cause of my stomach trouble--that I've explored all other possibilites and seen a bunch of specialists over the years. My response to the gluten free diet has been nothing short of amazing, especially given how short of time I have done it. I have yet to go more than 6 days in a row truly gluten free.

I plan to keep a journal during my strict gluten diet and challenge and then bringing my findings to my allergist who told me not to worry about my "false positive" wheat and barely allergy. (He said it was a cross reaction to all my grass allergies.) And perhaps get a second opinion from another allergist--maybe one more alternatively minded. I'm doing this because I want to try to determine whether it is a food allergy or gluten intolerence, if possible. But assuming I continue to feel better, even if I hit a dead end with the allergists, I will just resume the diet and not worry about a diagnosis anymore.

[ravenwoodglass]

  sneezydiva said:

I plan to keep a journal during my strict gluten diet and challenge and then bringing my findings to my allergist who told me not to worry about my "false positive" wheat and barely allergy. (He said it was a cross reaction to all my grass allergies.) And perhaps get a second opinion from another allergist--maybe one more alternatively minded. I'm doing this because I want to try to determine whether it is a food allergy or gluten intolerence, if possible. But assuming I continue to feel better, even if I hit a dead end with the allergists, I will just resume the diet and not worry about a diagnosis anymore.

It can be soooooo darn hard, I know I have been there. I had to smile a bit at what your allergist said because it was an elderly allergist who diagnosed me. He actually said the exact opposite of what yours did. When I was skin prick tested for close to a hundred different allergens the only thing I was not allergic to was beech trees. This was when he started to suspect celiac. (I had been blood tested for celiac and repeatedly negative for years but no doctor ever even told me what the diet was let alone suggest I try it.) The allergist then put me on an elimination diet and within a month, after 15 years of misdiagnosis, I was finally on the road to life instead of a quickly approaching painful death. He said on the day that he referred me to a GI for final confirmation of celiac that I should not be surprised if my allergies, fibro, arthritis and MS type symptoms were relieved also. I was just glad not to be sick to my stomach anymore and believed the other doctors who said I would just have to learn to live with my pain and disability. Guess what I have almost no allergies any more and am almost totally pain free. We can not rely on just tests alone and the gluten-free diet will not mask any other problems.

[sneezydiva]

  ravenwoodglass said:

It can be soooooo darn hard, I know I have been there. I had to smile a bit at what your allergist said because it was an elderly allergist who diagnosed me. He actually said the exact opposite of what yours did. When I was skin prick tested for close to a hundred different allergens the only thing I was not allergic to was beech trees. This was when he started to suspect celiac. (I had been blood tested for celiac and repeatedly negative for years but no doctor ever even told me what the diet was let alone suggest I try it.) The allergist then put me on an elimination diet and within a month, after 15 years of misdiagnosis, I was finally on the road to life instead of a quickly approaching painful death. He said on the day that he referred me to a GI for final confirmation of celiac that I should not be surprised if my allergies, fibro, arthritis and MS type symptoms were relieved also. I was just glad not to be sick to my stomach anymore and believed the other doctors who said I would just have to learn to live with my pain and disability. Guess what I have almost no allergies any more and am almost totally pain free. We can not rely on just tests alone and the gluten-free diet will not mask any other problems.

Oh my goodness! I can't thank you enough for posting this! As you have probably gathered from other posts, I've had horrible allergies for over a decade! I too have tested positive to almost anything--including all the grasses out there. And my allergies keep changing! I'm retested frequently due to moving around a lot. In one town I was allergic to cats but not dogs and in another town I was allergic to dogs but not cats! And a year ago I was suddenly allergic to many foods, and I never had any food allergies before.

I just read in the book Dangerous Grains that a gluten free diet usually improves food allergies. I just orderd the author's food allergy book to read also. I really feel I have found the missing link! You've made me very hopeful I can get an allergist to diagnose and/or get me a biopsy even though my blood test is negative. More and more, I'm okay with not getting an official diagnosis, but I also want to know that I tried all I could to get one--mainly because my husband worries about it. But it is so comforting to know a real live person who has had a similar experience. It helps me know that I'm not crazy or grasping at straws. It's NOT my imagination that after 2 days of gluten free my sinuses finally started draining. And after 5 days they were clear! Thank you!

p.s. I also had the best allergy care from an elderly allergist. Perhaps if I hadn't moved to a new state he would've went down the celiac road eventually. He was very methodically trying to get to the root cause of things. Younger doctors usually don't do that unfortunately. It will be very sad when all today's older doctor's are retired.

[ravenwoodglass]

  sneezydiva said:

!

p.s. I also had the best allergy care from an elderly allergist. Perhaps if I hadn't moved to a new state he would've went down the celiac road eventually. He was very methodically trying to get to the root cause of things. Younger doctors usually don't do that unfortunately. It will be very sad when all today's older doctor's are retired.

I feel the same way. Older doctors tend to look at the person as a whole and I think our medicine has gotten so specialized that it actually hurts us when we have a systemic malady like celiac. They never stick their heads together when more than one system is involved.

My allergist is great, he sat across from me in his office on an old Underwood Typewriter complete with carbon paper. I had been to a couple of the best hospitals in the country and was seeing rhuematologists, neurologists, GI doctors, GI surgeons, Orthos you name it and none of these could ever figure it out. I send him a card every holiday season and this year on my 5th anniversary I will send him something special. He literally saved my life.