Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

[rsvtwin6]

Hello All

I have been in pain for the past 28 years, unbearable muscle pain, was tested for everything but nothing was tested  as positive, they almost made me think the pain was in my head, about 2 years ago I went to a naturalpath, told him my story, he tested me for celiac and it came back positive, then he did a full food blood test to see what I have a reaction to and it came up with 30 items besides Gluten, I had never had stomach problems, he told me that he has patients who get stomach problems when they eat something and there imune system has an alergic reaction and inflames the intestines and he has a bunch of patients that instead of it inflaming there intestimes it inflames there muscles and joints and he thought that is what was happening to me, I went on an elimination food diet, I cut out all 31 items for 6 weeks, by mistake I messed up a couple times, but after the sixth week I started feeling better, I got that hop back in my step, I started mountain biking and riding my motorcycle and chopping wood and weed wacking, it was great, then I started cheating on the weekends and got back to it monday - thursday, I would be sore on m0nday and better on friday but to cheat again fri- sun, eventually I went on vacation on a wednesday for a week so after 2 weeks I reverted back to being in serious pain again, my muscles were so tight that I had ringing in my ears for ever, after the initial 6 weeks it went away and now it was back again, omg, I then went on the diet for another 6 weeks, I felt better but not as good as I did the first 6 week "fast", did some work in my yard and pulled muscles, neck so tight I had severe head aches and my vision was messed up, after another 2 weeks I did 6 weeks again but to no avail not feeling better, after the last 6 weeks I only cheated on saturdays, then 2 weeks ago I went on a week vaca and could not stick to my diet, and I am in the worst pain ever.....just dont know what to do, of course I am back on the diet  but it wont last, I can not stick with avoiding all the foods, here is the list

I have celiac, wheat, rye, soy, gluten, calamari, chicken, cod, milk, eggs, cod, quinua, rice, green pea, casein, cranberry, gratefruit,  kiwi, lemon, orange, cofee, yeast, almond, chia seed, pistachio, popy sead, saflower, sesame, horseradish, walnutm basil, oregano, and HEMP, I allways thought hemp helped my pain but no..... so as you can see its hard avoiding all of this, I also found out recently I have ulcerative colitis, now I am starting to have no stomach pain but my bowel movements and sudden, hard to hold, I am only 50 years old, really stressed out and in pain, dont know what to do, anyone else have a similar experience or advice?

Thanks for listening

[trents]

rsvtwin6, welcome to the forum!

Those blood tests the naturopath did to check for food sensitivities/intolerances can be deceiving. I've had those done and skin prick sensitivity/allergy testing as well. There was some agreement between them but much disagreement. Like you, I had 30 plus foods that turned up as me reacting to. Some were strong reactions, some were mild and some weak. It was discouraging because I could not eliminate all those things and still eat enough to live. That kind of testing turns up a lot of false positives. If you send the same blood sample to different labs for analysis you would be surprised at how much the results differ.

On the other hand, there are antibody tests that are specific for celiac disease and that give much more dependable results than blood tests for food sensitivities/allergies. Celiac disease is not an allergy. It is an autoimmune disorder that produces certain kinds of antibodies that can be tested for. Do you know specifically what kinds of tests were done to come to the conclusion that you have celiac disease? Here is a primer:

Having said all that, it is very common for people with celiac disease to develop other food sensitivities and intolerances. I also would suggest you do some research on MCAS (Mast Cell Activation Syndrome)  and histamine intolerance which is common among the celiac community.

[rsvtwin6]

22 minutes ago, trents said:

rsvtwin6, welcome to the forum!

Those blood tests the naturopath did to check for food sensitivities/intolerances can be deceiving. I've had those done and skin prick sensitivity/allergy testing as well. There was some agreement between them but much disagreement. Like you, I had 30 plus foods that turned up as me reacting to. Some were strong reactions, some were mild and some weak. It was discouraging because I could not eliminate all those things and still eat enough to live. That kind of testing turns up a lot of false positives. If you send the same blood sample to different labs for analysis you would be surprised at how much the results differ.

On the other hand, there are antibody tests that are specific for celiac disease and that give much more dependable results than blood tests for food sensitivities/allergies. Celiac disease is not an allergy. It is an autoimmune disorder that produces certain kinds of antibodies that can be tested for. Do you know specifically what kinds of tests were done to come to the conclusion that you have celiac disease? Here is a primer:

Having said all that, it is very common for people with celiac disease to develop other food sensitivities and intolerances. I also would suggest you do some research on MCAS (Mast Cell Activation Syndrome)  and histamine intolerance which is common among the celiac community.

Hey thank you, not sure what test was done but afterward my gatro guy did some test and he confirmed the celiac disease, I will check in to the MCAS and histamine intolerance...

[trents]

MCAS and histamine intolerance go together like a hand and a glove. Many of the symptoms you describe as well as the plethora of foods you supposedly react to strike me as having a larger underlying cause like MCAS.

[Wheatwacked]

Gluten is very addictive, as you can see.  Very common to have many other food intolerances, I think because of the change in gut environment.  You should work on vitamin and mineral deficiencies, hand in glove with Celiac Disease.  You actually finally have a Celiac Disease Diagnosis.  Believe it or not.

Vitamin D, B1, B3, B5, Taurine, Choline, Iodine.  These may help your symptoms once you get them high enough.  A few days of high dose will impact your deficiencies.  Taking vitamins is not a cop out.  You are enhancing your dietary nutrients to compensate for what you don't absorb properly.

The western diet is essentially a very inflammatory diet.  The omega 6 to 3 fatty acids intake is estimated to be up to 20:1.  It needs to be around 3:1 or less.  Garden salads and salmon or mahi would help.  Miso, fermented pickles (not vinegar pickled) are good for the gut biome.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

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