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h3sbwb7 08-30-2004 10:00 PM

Hyperactive Immune System?
I went to a GI earlier this month for possible celiac disease. She told me that i'm not celiac but worse, I have a hyperactive immune system. I'm currently allergic to wheat, oats, rye, barley, citrus fruits, the list goes on and on... Can anyone tell more about this? Should i be going to another specialist?

PatNJ 09-03-2004 10:23 AM

Re: Hyperactive Immune System?

You must be feeling pretty discouraged right now. I am so sorry about your difficulties.

I am very confused by your GI doctor's ruling out celiac disease. CD patients cannot tolerate gluten from any source, including wheat, rye, barley, and (sometimes) oats. I'm not all that familiar with CD, and I do know that not all allergies to the above grains are necessarily related to [U]gluten[/U] intolerance, but your list of "allergies" to [U]wheat[/U], [U]oats[/U], [U]rye[/U], and [U]barley[/U] lead me to wonder if your doctor even performed the two standard antibody tests for gluten -- anti-gliadin and anti-transglutaminase -- before she rejected the celiac dx.

I'm sorry, and I confess that I know next-to-nothing about "hyperactive immune system", but for your doctor to say that this condition is "worse" than celiac disease perplexes me. [B]CD is a very serious condition[/B] and must be treated diligently with a gluten-free diet to avoid complications caused by malabsorption.

If I were in your shoes, I would seek the opinion of another GI doctor, rather than (at least initially) an allergist/immunologist. I would also suggest that you hop over to the Digestive Disorders forum, and post a message there, providing a list of your symptoms, as well as the results of the labwork that you have already had done. Someone else might be able to provide you with more and/or better advice. In that forum's Information Archives thread, there are a few links to sites related to celiac disease that you might find useful.

Additionally, you might want to check out the resource links provided on the HealthBoards' Home page. The National Institutes of Health site has some excellent info about celiac disease and links to other reputable resources.

Please post again. I am concerned about you and do wish you well.


h3sbwb7 09-05-2004 02:09 AM

Re: Hyperactive Immune System?
Thank you very much for your response and your concern. I went through the blood testing for CD earlier this year and all the tests were negative. I have been on a gluten-free diet since Jan. which is making me feel a lot better. The doctor said that it is not CD because my reaction to anything i eat are almost immediate whereas CD may take over an hour.
She is pretty sure that it is a hyperactive reaction by my immune system.

PatNJ 09-05-2004 07:42 PM

Re: Hyperactive Immune System?

I'm still confused... LOL. ;) I believe that the only definitive way to rule out celiac disease is to examine a small sample of tissue from the lining of the small intestine (during an upper endoscopy). Some CD patients [B]will not[/B] have elevated antibodies to gluten.

What [U]exactly[/U] does your doctor mean when she refers to a "hyperactive immune system?" From some research I did online, I read that [U]any[/U] allergy can be considered a response to a hyperactive immune system, but usually, that term is used synonymously with "autoimmune disease." (Interestingly enough, CD is an autoimmune disease!)

Do you have any symptoms that might be suggestive of an a/i disease, such as lupus, rheumatoid arthritis, autoimmune thyroiditis, Sjogren's syndrome, etc.? Have you had an ANA test done?

Is your GI doctor referring you to an allergist/immunologist?

I'm sorry to be bombarding you with so many questions; I guess I'm really confused by what you've written about your doctor's diagnosis and her reasons for ruling out celiac disease. :confused: Perhaps a second opinion from another GI specialist would be helpful.

Last year, when my son was 14, he was seen by a pediatric gastroenterologist for chronic diarrhea and abdominal pain. He had slightly elevated transglutaminase antibodies and underwent an upper endoscopy. Fortunately, the biopsies showed no signs of the villi damage associated with CD.

During this whole process, the doctor and I discussed food allergies; he said that food allergy testing can be tricky, because (from what I recall) there are two types of allergic responses to food -- one that is immediate, and one that can occur up to several days later. He said that skin-pricking and even RAST testing are somewhat lacking in their ability to accurately diagnose all food allergies. I remember reading about a third kind of f.a. testing and mentioning it to him, but I don't remember why he was less than convinced of its effectiveness.

At least the gluten-free diet is helping you!!!! I know what a dietary challenge it presents and how difficult it is to follow, but I am sure that the relief of many of your symptoms must make it all worthwhile! :)

I hope that you will continue to feel better and will get further directions from your GI doctor as to where to go from this point forward.

I truly hope that I haven't offended you in continuing to babble on about CD. :o Even if you do have it, you're already following the proper diet, anyway!! ;)

All the best of luck to you. :)


vamp36 09-06-2004 10:42 AM

Re: Hyperactive Immune System?
PatNJ is right, There are many Autoimmune diseases. Some do affect the GI system. I for example, have Autoimmune Hepatitis. My immune is attacking my liver, pancreas and galbladder. My galbladder had to be removed 5 months ago. So I have liver damage and pancreatitis now. I am on a low-fat, low-salt, low sugar diet. It helps me. Talk to your doctor about a possible autoimmune disease. For some, there are treatments for them. Good luck to you. Let us know what happens.

PatNJ 09-06-2004 11:23 AM

Re: Hyperactive Immune System?
Hi, Vamp36,

I'm so sorry about your current state of health. You have been through h*** and back, I am sure, and I can't imagine that you ever really feel "well".

Pancreatitis is very painful. Besides your dietary restrictions, is there anything that can be done to address the chronic inflammation and/or pain?

Would immunosuppressive drugs help halt the progression of the liver damage? I guess that's a silly question, because the i/s drugs can themselves cause liver damage. I am on CellCept for myasthenia gravis, and I have to have periodic liver function tests.

The rotten, stinking, crying shame of the autoimmune nature of your hepatitis is that you cannot be a candidate for a liver transplant, because your body would (I assume?) continue its self-attack on the new liver. :mad:

I hope that you are receiving top-notch medical care and treatment. My heart goes out to you, sweetie, and I will keep you in my prayers. :)


vamp36 09-06-2004 12:56 PM

Re: Hyperactive Immune System?
Hi Pat, I am on high doses of Prednisone to keep my immune system from continually attacking my liver. I've also been on a chemo drug periodically when I get bad attacks. I also have liver funtion tests every 2 weeks. No, I haven't felt "good" in about 6 months now. The doctors keep telling me I may need a transplant someday, But you are right. It can happen to the new liver as well. Then I would be on more immune suppressive drugs than I am on now. My liver is twice the size as normal and very painful. I take mscontin daily for the pain. I never new a liver and pancreas could hurt so bad!!! I keep hoping that someday they may find a cure or something to help with the overactive immune systems we seem to have. Your illness can't be easy to have either. I've heard of Cellcept. Some AIH patients are on that as well along with the Pred. Are there alot of side effects to it? Take care , tina

PatNJ 09-06-2004 03:56 PM

Re: Hyperactive Immune System?
Oh, Tina,

I wasn't even thinking that your liver would hurt so much, too; I was focusing on your pancreas. Good Lord... I don't know how you do it, you poor dear. The worst aspect of MG for me is having to be relatively housebound, due to my limb weakness and constant double vision (the DV makes driving very difficult... and dangerous!); but I am in no pain from the MG. I know how lucky I am.

Is mscontin in the same family as Oxycontin? If so, is it any better at relieving pain?

I can't take prednisone, because of a history of near-psychotic reactions to it on very mild doses (for allergic inflammation and asthma).

I have not been aware of experiencing any side effects from the CellCept. I've gained some weight, but that could be due to my lack of normal physical activity, never mind exercise. Most people tolerate CC very well -- more so than is the case with Imuran or cylcosporine.

Perhaps you should consider discussing CC with your doctors. Prednisone is no fun for [U]anybody[/U], and at least in the case of MG, it is not as effective as CellCept, at least long term. (I've been on CC for four months and have not experienced any alleviation of my symptoms. It is known to take up to 6 to 12 months to "kick in".) Of course, I don't know if the same level of long-term efficacy would be true for your condition.

The next time I catch myself moaning about my "lot" in life, I will think of you and offer up a prayer for you.

I hope that you have been able to explore all options available to you for pain management, such as acupuncture and even medicinal marijuana.

Please let me know if you decide to discuss CellCept with your doctors.


vamp36 09-06-2004 05:10 PM

Re: Hyperactive Immune System?
Mscontin is morphine based and helps more than the oxycontin did. I will ask about Cellcept. I'm on a taper of the prednisone now as it is causing problems of it's own. Mainly joint pain in my knees and hands. But I will still have to be on a small dose of pred daily, as it's the only main drug to work on AIH. But If I can take Cellcept along with the Pred, then I can be on small doses of Pred , which will help. I see the Doctor tomarrow, so I will ask then. Have a good night.

PatNJ 09-07-2004 09:50 PM

Re: Hyperactive Immune System?
Hi, Tina,

Please let us know how you made out with the doctor today (by the clock, as I write this, yesterday). I certainly hope that he is willing to give CellCept a trial run. Unless he has major concerns about possible liver side effects from the med, I don't know what you have to lose at this point.

Hope to hear from you soon. Take care.


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