Questions Regarding Blood Tests And Celiac Diet

[Hardeep]

Hi everyone. I am 27 years old and suffering from a number of celiac-like symptoms, the worst of which is joint pain (scattered all over the body). I have a lot of intestinal problems as well, bloating, diarrhea, constipation etc. Anyways, I have had all the relevant blood tests done and everything came out negative (save a red blood cell count that was very slightly below the normal range). Specifically, my IgA and IgG levels were normal. I was wondering what percentage of celiac sufferers have a normal levels for these two tests? Also, if one had the disease and the joint pain, how long does the pain typically take to go away after the switch to the gluten free diet?

I have tried the celiac diet for the last 5 weeks, and not much seems to have changed (definitely nothing regarding the joint pain). One of the main reasons I thought I might have the disease was because my mother has been conclusively diagnosed with it.

Thanks.

[Mother of Jibril]

Actually, it's not that uncommon to test "negative" on a celiac panel, even if you have a problem with gluten. The reference numbers are set pretty high to correlate with visible damage to your villi. You could easily have damage that just isn't visible yet! Some people even have a negative blood test and a positive endoscopy.

Also, gluten can damage a lot more than your intestines. Have you considered seeing a doctor... like a rheumatologist... about the joint pain?

If you're strict about a gluten-free diet, your immune system should stop making antibodies in 3-6 months. However, some types of damage are not reversible. You just have to wait and see. Check out the signature of "ravenwoodglass" for some inspiration

[Hardeep]

Thanks for the response. The reason I asked the question was that my GI doctor told me that the blood test catches 95% of celiacs. I found that number to be pretty high.

I am scheduled to see a rheumatologist, but it will be a while before the appointment. I am now trying to go off all foods that give me issues, and may try reintroducing gluten once I done with that and see how that goes.

I had another question: Does anyone find that the lactose free milk still gives them problems? I had to switch to soy milk.

[julirama723]

My tests came back negative, but I'm IgA deficient, and I'm still awaiting test results to find out just how deficient I am. I don't know exact numbers, but 95% seems a little steep. I know there are a LOT of false negatives with the serological testing. (Even if I don't ever get an official celiac diagnosis, I am sticking with gluten-free eating, as I finally feel like my old self!)

I discovered that I can't handle basically ANY dairy after going gluten-free. My body doesn't like lactose OR casein! Soy milk has casein, so if you're still having problems, it might be due to casein or the soy itself. (Soy is a problematic food for many.)

[ravenwoodglass]

The actual number for false negatives according to the NIH is about 30%. It can take a while for the antibody reaction and the inflammation to leave the joints. It took about 3 months for me to really notice the difference in my arthritis and by 6 months it was in remission. The only time I have any flares now is with severe glutening. I have been able to add back in a bit of dairy with no issues but soy is a big problem for me and will cause the same joint pain that gluten does but different GI symptoms and of course no DH. You may for the time being want to go with a gluten free rice, almond, hemp or other alternative milk, Don't get Rice Dream though that is not really gluten free. After your pain eases then go ahead and add back in soy to see if it is a problem also.

[Mother of Jibril]

Soy milk has casein, so if you're still having problems, it might be due to casein or the soy itself. (Soy is a problematic food for many.)

I've never seen a brand of soy milk that has casein... I have to be careful about it because my (breastfed) son is very sensitive to casein. He's fine with soy.

Have you noticed a particular brand that does have casein?

[lizard00]

Have you been tested for any food allergies?

I have a friend who is allergic to egg whites. (I am too, which is how we got on the topic)

Her symptom was joint pain. Sounds random, but allergic reactions create inflammation... inflammation does bad things.

It may be worth looking into.

[julirama723]

MoJ--I can't remember the brand off-hand. I haven't purchased it in a while! Let me do some research and I'll get back with you.

[BarbaQ]

Hello

You may want to consult a dietition about what foods to avoid if you have joint pain. I have read that the nightshade plants (tomatoes, potatoes, ect) cause an increase in problems related to arthritis. Also, omega 6 oils tend to increase inflammation.

Is you doctor planning to do a biopsy? Did they also do the transglutaminase or only anti-gliadin?

Barb

[sbj]

Have you considered illnesses other than celiac disease? I was just reaidng another thread about ulcerative colitis - you have some of the symptoms:

The clinical presentation of ulcerative colitis depends on the extent of the disease process. Patients usually present with

diarrhea

mixed with blood and mucus, of gradual onset. They also may have signs of weight loss,

abdominal pain

and blood on rectal examination. Ulcerative colitis is a systemic disease that affects many parts of the body. Sometimes the extra-intestinal manifestations of the disease are the initial signs, such as

painful, arthritic knees

in a teenager. It is, however, unlikely that the disease will be correctly diagnosed until the onset of the intestinal manifestations.

Have you ever had a colonsoscopy? You may want to plug some of your symptoms into the WebMD symptom checker and see if any of their suggestions make sense.

[ang1e0251]

For the milk question, I also cannot tolerate Lactaid but my daughter can. ??

[Hardeep]

Thanks for the suggestions everyone! I have finally gotten frustrated enough to keep a diary of what I eat and how I feel afterwards. I found that even after eating non-dairy, non-gluten (as far as I can tell) foods, I could feel nauseous, bloated etc.

I have never been tested for allergies, though I may have to find out, especially about the nightshade allergy. The joint pain I get seems to occur typically in those joints I use the most (makes sense I suppose); first the knees (3.5 years ago) which I attributed to playing too much squash, then a shoulder which I attributed to too much swimming. Then my finger joints...which I blamed on using the computer too much (though I don't use it that much, as I don't really need one too much in day to day life) and finally my elbows, which I thought may be due to Yoga. None of those ever heals given time. I have no swelling, no noticeable inflammation, just pain every so often when the joints are used.

BarbaQ: The doctor ran this test and got the result:

Immunoglobulin A 2.01 [0.70-4.00] g/L

Immunoglobulin G 10.3 [6.7-15.2] g/L

sbj: I just looked into the symptoms for ulcerative colitis. They seem much harsher than anything that I have ever displayed (even the joint pain is bearable without medication, though it prevents me from doing almost all physical activities). My doctor has scheduled a gastroscopy, but not a colonoscopy in a few months (he is giving me time to see if eliminating more foods helps).

[ang1e0251]

My joint pain went away with the gluten-free diet but I do have muscle pain now if I don't take my B12 or other vitamins.