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I would strongly recommend you get tested for Lyme Disease with the Western Blot test. The two best labs are Stonybrook and Igenix. Try not to use the 2 most common labs, their tests are not as sensitive.
ALL of your symptoms are indicative of Lyme. I had many of them myself. I was dx'd with Celiac in 2010 and after 3 years on a gluten free diet I continued to suffer with a lot of muscle pain, stiffness in my back, constantly going to physical therapy. I also started getting terrible racing heart, bladder problems and all sorts of weird things.
If you have been tested already and it came back negative, I would retest. sometimes a month's worth of antibiotic therapy will cause the Western Blot test to start showing Lyme bands as you kill off some of the spyrochetes the immune system starts to recognize the lyme and starts making some antibodies that the test will pick up eventually. Many people who are sick like you have an ELISA test or a Western Blot test and it comes back negative and they stop pursuing Lyme. It can be a mistake.
I have been on antibiotics for over a year and with good probiotics I have been able to do this and improve. Also test for the MTHFR genes to see if you have any mutations in your methylation/detox pathways. Believe me, it took years to piece all of these things together in my own journey to get better.
I saw my Lyme doctor and he said the flu shot is ok so long as I am not sick in the sense of having fever or overt symptoms. I still have to find an immunologist in my area. This recent bout of upper respiratory infection really knocked me down hard so I cannot afford to get the flu, I could lose my job if I keep calling in sick.
What surprises me is that all of us with celiac and perhaps other autoimmune issues should be checked up front for these deficiencies. I have gone all my life not knowing I had celiac until my 40's. Then found out I had Lyme for who knows how long.
I say all of this because I hope others are reading/following this thread because I have a feeling many can relate to being sickly all their lives and not understanding why, then finding out you have celiac and thinking "ah ok, well this explains alot," only to keep getting sick and not feeling better after going strictly gluten-free. THen you start peeling back the layers and there is Lyme, immune deficiencies, detox'ing problems etc etc.
thanks Laura and SMRI this has been really helpful.
One thing I noticed on the LabCorp report dated October 10, there is a note below the ranges that says as of Oct 20 the reference ranges will be changing, which will put the scores I received within the new ranges. Not sure how this works. Maybe the measurement will still be the same.
Once I find an immune deficiencies specialist they will probably want to run the tests again anyway. Going to get my flu shot. It's just on the Lyme boards, they are all adamantly opposed to them, so in my case it's damned if I do, damned if I don't. But I will get it. There is a pulmonary group close to my place that offers a shot that has no preservatives, whatever that means.
Thank you, Laura TX much appreciated. The doctor who did the labs, at my request, said the same thing.
Any thoughts on getting flu vaccines, or do you avoid them? Many on the Lyme group from another site say to avoid the flu shot. I get it because I work around college students every day. But the last few times I felt bad afterwards and had to take a day off from work. It kept me from getting the flu, which in the past has been just horrendous, with high fever and upper respiratory problems.
Thank you for the responses. I just got my lab work:
IgG Serum is 776 and the reference range starts at 700
IgG1 below normal. It is 339 and the reference ranges starts at 422
IgG 2 is good, right in the middle of the rangee
igG 3 is below normal, it is 37 and the reference ranges starts at 42
IgG 4 is in the normal range but it is 15 and the new range will start at 2 to 115 for adult males.
I have not seen an immunologist yet as I just got these results. My CD57 is low also, like 24. There is one close by that is an Immunologist/Allergist. Graduate of Yale. I don't know if these numbers are that bad or what. I have been treated for Lyme this past year, dx'd with Celiac in 2010. Been sick since a child. Started with ear infections, got meningitis at 6 months old. Not supposed to be here on this earth really. Until this recent bout with a bad head cold and cough, fatigue and short fever, I was doing very well not getting sick. This was a bit of a set back for me. I am taking long to recuperate this time but I went through the ordeal of my mother's open heart surgery and recovery so I was really stressed out and running to the hospital constantly.
same here. I was still sick with fatigue, muscle pain in my back, hips and legs, body temp was off. was constantly in physical therapy for muscle knots. stab in the dark asked my doctor for a lyme test and it came back positive. been on abx for a year with alot of probiotics and am feeling better.
yes, thanks for the tips. I usually read all the ingredients cards and stick with plain chicken, steamed rice/veggies and salads, nothing too fancy and I try to avoid anything that is close to gluten items.
I will be doing bloodwoork soon, its been awhile, so I will see where my antibodies are, hopefully close or at zero readings....
I eat twice a week at the Whole Foods cafeteria/buffet. Is this just too risky for Celiacs? I don't seem to be extremely sensitive since its been 4 years since my dx, but still, I don't want to be getting too much gluten exposure. I try to find the safest items such as rotisserie chicken, rice, and steamed veggies and or salads.
anyone eat there, or is it just not safe due to cc?
I started eating the chocolate and sea salt ones after only eating the Madagascar Vanilla. I stopped completely and now I tried the Madagascar again and it wasn't as bad. Honestly, the product does not say certified gluten free, so I really don't know the ppm's of the product. Plus it does not indicate anything about oats, which would definitely bother me.
any conclusions? have you stopped Kind bars altogether?
I googled this topic and here it is! Like the first poster last year, I usually have a Kind bar with an iced latte at Starbucks. Lately though, I am getting like an indigestion. I eat a Kind bar every day, it's my go-to quick snack on the go.
Maybe it's the cc with oats? Or maybe the Starbucks, but I heard the plain latte's are reasonably safe.
I get the worst constrochondritis-type pain in my sternum and pain in the ribs there after having this combo.
I don't think they are certified gluten free, are they?
I was quite ill for a while before and after diagnosis. I kept asking the Gastro doc if there could be anything else going on. It turns out several years later I was dx'd with Lyme disease. If you have spent time outdoors hiking, gardening, camping, especially in Lyme infected areas like Northeast, Mid-atlantic or Midwest, I would get a Lyme Western Blot test done through IgeneX, Yale or Stonybrook University labs. Just adding my opinion, because I was attributing all of my symptoms to celiac when in fact they were Lyme.
many are complaining of jaw pain and neck muscle aching. TMJ and jaw pain are closely related to fibromyalgia which has a high incidence in the celiac population. I have chronic muscle and tendon pain even after going gluten-free for 3 years, though I have to say I eat out alot and I now have to curb my eating out because inevitably I am being glutened alot.....
I am wondering if my symptoms are hypo thyroid. My latest TSH was 3.25. My functional medicine doctor got me down to 2.5 a few years ago but
it has gone back up.
I have been experiencing alot of muscle pain lately. I wake up with stiff muscles every morning. Fatigue and listlessness. I recently went for a trigger
point massage and the therapist revealed painful points all over my body, thighs, butt, back and spine. He never went up to shoulders or I would have
been in worse agony if he had.
Could all this muscle pain be thyroid related. My PTH was 17, which was low. I am taking hydrochlorothyozide 12.5 mgs for calcium leakage from the kidney's because I have osteoporosis in my femur neck.
I say all this because my point is similar to gifree's. Since going gluten-free 3 years ago, it's been one thing after another, a downward trajectory rather than an upward one to better health. This really sucks I have to say.