Very Confused

[Joel M]

Hello Everyone,

I have a bit of history I'll give first off.

For most of 2007 I was tired all the time. I also had a dull pain in my upper right abdomen (right under my rib cage), which was never too painful, but was always there. I had varying other symptoms such as twitching eyelid and muscles, and occasional bone aches. I went to a couple of doctors, one of which tested my gall bladder and found nothing wrong, the other tried to prescribe Prilosec. Finally, in September of 2007 I went to a naturopathic doctor who said that I had a fungus problem, and was sensitive to gluten. I went on a diet which was gluten free and also free of any foods which promote fungal growth. I felt better within two days of starting the diet. Things were going great. After a month I started eating everything but gluten and things were still fine. Then Christmas came and I decided to start cheating, after Christmas I got married and went on my honeymoon, all of this time eating whatever I wanted. After this, my symptoms returned. However, I also began having muscle shakiness in addition to my previous symptoms. My muscles weren't weak, just shaky when I flexed them, and they were even more shaky when I exerted them (i.e. went for a run, etc.). I went back to the gluten free diet in late January of 2008. Since then I have been gluten free, however the pain in my side, although not as severe, is still present. My muscles are still shaky all the time, my eye has been twitching, and I'm tired all the time.

I'm very confused because initially the diet fixed everything. Now it only partially fixes things (if I do have gluten the pain in my side is much more severe than normal). Do any of you have any idea what could be going on? I'm thinking about going back to a different doctor, however I've had no luck with doctors in the past. Thanks in advance for any advice you guys may have.

Joel

[RiceGuy]

Welcome to the board!

From my experience, and all I've read, what it sounds like to me is that the intestinal damage has lead to malabsorption, and nutrient deficiencies. This is very common, and can take time to heal. So what I'd suggest is to start taking a few supplements. A sublingual methylcobalamin (active form of vitamin B12), of at least 3mg daily, magnesium (start with 200mg and work up to your optimal level - if you take too much it may begin to have a laxative effect), B-complex, calcium, vitamin D3, potassium, and omega-3s. Also, watch for signs of anemia, and consider iron and/or zinc supplementation if needed. Your doctor should be able to order the blood work to check for deficiencies, but many times, those tests do not provide an accurate picture of what your body really needs. If you do get the tests, make sure you get all the test results, not just whatever the doctor tells you afterward.

It is often advised to avoid all processed foods, and stick to whole veggies, fruits, etc. Also, dairy is often a problem while healing, so you may benefit greatly by avoiding that too, at least for a while.

I hope this is helpful to you. Hang in there, and it will get better!

[Mother of Jibril]

Good advice. I was just reading this week about how twitches are caused by an imbalance of magnesium, calcium, and potassium... the electrolytes needed for proper muscle function.

It's definitely possible to have malabsorption without full-blown celiac disease, but have you ever been tested? It might be worth it to do this before you get back on the wagon

[Joel M]

Welcome to the board!

From my experience, and all I've read, what it sounds like to me is that the intestinal damage has lead to malabsorption, and nutrient deficiencies. This is very common, and can take time to heal. So what I'd suggest is to start taking a few supplements. A sublingual methylcobalamin (active form of vitamin B12), of at least 3mg daily, magnesium (start with 200mg and work up to your optimal level - if you take too much it may begin to have a laxative effect), B-complex, calcium, vitamin D3, potassium, and omega-3s. Also, watch for signs of anemia, and consider iron and/or zinc supplementation if needed. Your doctor should be able to order the blood work to check for deficiencies, but many times, those tests do not provide an accurate picture of what your body really needs. If you do get the tests, make sure you get all the test results, not just whatever the doctor tells you afterward.

It is often advised to avoid all processed foods, and stick to whole veggies, fruits, etc. Also, dairy is often a problem while healing, so you may benefit greatly by avoiding that too, at least for a while.

I hope this is helpful to you. Hang in there, and it will get better!

Thanks for the replies. I am currently taking an essential oils supplement, a coral calcium complex, cod liver oil (vitamin D), and a greens mix. However maybe I need the magnesium and other stuff you mentioned.

And no, I've never been officially tested, I just know that I felt completely different the first time i went off gluten.

[ravenwoodglass]

Thanks for the reply. I am currently taking an essential oils supplement, a coral calcium complex, cod liver oil (vitamin D), a greens mix, and a vitamin B supplement. However maybe I need the magnesium and other stuff you mentioned.

Have you checked the green's mix to be absolutely sure it is free of any form of wheat or barley? It is not unusual for some of these to have wheat grass or barley or perhaps even wheat germ oil for the source of Vitamin E and some companies considered the grasses and oils to be gluten-free.

[Joel M]

Have you checked the green's mix to be absolutely sure it is free of any form of wheat or barley? It is not unusual for some of these to have wheat grass or barley or perhaps even wheat germ oil for the source of Vitamin E and some companies considered the grasses and oils to be gluten-free.

The greens mix does have Wheat Grass in it, however the company told me that it was still gluten free. Is this not the case?

[ravenwoodglass]

The greens mix does have Wheat Grass in it, however the company told me that it was still gluten free. Is this not the case?

Many of us have problems with wheat grass. You might want to stop taking this for at least a couple of weeks. Your problems may well resolve.

[curiousgeorge]

You should have your thyroid levels checked too. Shaking and fatigue can be signs of Graves.

[harp1]

I have a tremor too. The magnesium shots help with that especially. The B12 shots help with my stiffness in my hands, peripheral neuropathy. Why don't you post a new topic - is there a doctor in NYC or wherever you live. I personally think you need a good doctor. Checking your thyroid levels are critical - alot of this could be connected to it. I'm so impressed with the level of expertise on this forum. Thanks everyone Susan

[Joel M]

I just have one more question. Thank you everyone for your input thus far.

Why do I still have the pain in my side even though I've been gluten free for months? The first time I quit gluten the pain went away after only two days? One thing is for sure, I haven't been as careful as I should about cross contamination and stuff until the past week or so (I didn't realize it was such an issue until reading up about it on these forums). However, I'm certainly more careful now than I was the first time I went off gluten. It just worries me that the pain is still there, and leads me to believe that my intestines are not healing, and are continually being aggravated (like i'm unknowingly ingesting gluten from somewhere). Because I don't have any of the D or upset stomach that others have, it's difficult to discern when I've had gluten.