Had Enough

[smile]

Ive not posted in a while. Im not sure how long Ive been gluten free now, possibly just over 4 months. My dietician agreed that gluten was doing me no good eg weight loss/couldnt gain weight, tiredness, feeling sick daily, frequent bowel movements and tiredness. A few months in it was also suggested to try going lactose free. Well I can say all in all I have very little problems with bowel movements up until now, I feel sick maybe 3 times a month and the hair loss has stopped completely.

Now the tiredness has been extreme lately, Im also getting pain/aches in different points of my body. My doctor thought it was in infection and prescribed antibiotics. It made no difference, I was also having trouble sleeping, waking up in the morning so tired. I was also getting chest/back pain. I went back and was sent for tests for inflammation ans vitamin d levels. My vitamin b levels and iron/ferritin were all normal and fine as is thyroid, glucose etc. I was prescribed something to help with the sleep and it has helped. However the tiredness and pain was so bad I spent three days in bed. Last time I saw my gp he said my vitamin d levels were 10 below the normal level and told me to get more sun (we are in the winter, you get up its dark, come home from work its dark). I saw another doctor (out of hours) who has said I need vitamin d and calcium supplements.

Now Ive got a good friend who feels what Im going through is down to chronic fatigue syndrome or fibroymalgia. Also wanted to say Ive still not gained weight (Im around 6st 12 -13 now) Ive also experienced stomach cramps/diarreah on a few occasions).

Every doctor I see puts it down to anxiety, which I dont believe, my parents tell me Im just tired because Im in bed so much. The reason Im in bed is because even carrying a box makes me arms ache for the next few days. Then someone I trusted has said its because of my diet and that Im probably not eating properly. I just dont get it why will no one listen to me, I just feel like telling everyone Im fine and to leave me alone if they dont want to believe me. From what Ive read a vitamin d deficiency can take a while to get like that, plus is gluten free that bad, I eat fruit/veg/meat/potatoes/rice/eggs/fish/gluten free cereal/break and fruit and nut bars. Surely that is ok. Im starting to feel like all of this is my fault. Ive not been able to go to work with all this tiredness/pain/headaches.

I just dont know what to do anymore, please tell me if my gluten free diet is probably the cause of my recent problems.

[Skylark]

It sounds like you feel awful. I know how bad that fatigue can get because gluten caused it for me. Low vitamin D can make you feel really lousy. My Dr. told me to get a 2000 IU supplement when mine tested low and I feel a lot better.

Going gluten-free doesn't make people sick if that's what you're asking about diet. Folks without gluten intolerance don't notice any difference at all. It's like you or me going without rice for a few weeks. Not a big deal. You clearly have issues with gluten since you stopped losing hair.

Gluten-sensitive folks tend to get a LOT more sensitive to gluten once our immune systems settle down from the long-term assault. Is there any chance you're getting hidden gluten in your food? Are you cooking in a kitchen with breadcrumbs around? Are you eating oats? Mainstream brand oats like Quaker have wheat grains in them, and some celiacs still react to oat gluten (avenin) in pure oats. If you think you're not getting CC, drop the processed foods and all dairy. Many celiacs cross-react to dairy for a while at first, and the 20 ppm many companies use as a cutoff for processed food can be too much gluten. Also look very closely at soy, as a lot of us are intolerant to that.

Hope this helps and that you get some more ideas.

[rosetapper23]

I think your doctor may, in fact, be missing a thyroid problem. The symptoms you're describing are very much the ones that I experience when I take too much thyroid medication, making me hyperthyroid. Joint and muscle pain in all joints, along with fatigue, weightloss, and frequent bowel movements, are the presenting symptoms for me when this happens. Thyroid tests are notorious for not completely telling the story....so you may need to have this test redone or request to see an endocrinologist. Some people simply do not fall into the "average" range with regard to their thyroid hormones. It could be that gluten was hampering your thyroid in some way, and now it's producing hormones overtime. It's a delicate balance for many of us.

This is just an educated guess, but I do feel that you are suffering from some type of endocrine disorder (maybe even your adrenals are causing you trouble). Such disorders can have serious consequences on your health, so I hope your doctor is willing to refer you to a specialist.

[Dixiebell]

Hi smile!

I too had very low vit D (16.7, range 32.0-100.0) and all other levels were fine. My Dr. gave me an Rx of 50,000u to take once a week for two months and then to take 3,000 - 5,000iu a day. Also I added 1,000iu of fish oil a day and a vit B-complex. It took a a few months for the fatigue and almost unbearable body pains to go away but it did. I was on anti-depressents for a few years and was able to wean off of those. I believe the fish oil and B helped with that too. I did have to quit my part-time job because I just could not do it. I would work for five hours, pick up my son from school and sleep until I had to start dinner. It was awful.

I would look into getting some vit D into your system, I believe that you can get a 5,000iu at most stores. Then have your levels checked again after a few months to see where you are.

[ravenwoodglass]

Gluten-sensitive folks tend to get a LOT more sensitive to gluten once our immune systems settle down from the long-term assault. Is there any chance you're getting hidden gluten in your food? Are you cooking in a kitchen with breadcrumbs around? Are you eating oats? Mainstream brand oats like Quaker have wheat grains in them, and some celiacs still react to oat gluten (avenin) in pure oats. If you think you're not getting CC, drop the processed foods and all dairy. Many celiacs cross-react to dairy for a while at first, and the 20 ppm many companies use as a cutoff for processed food can be too much gluten. Also look very closely at soy, as a lot of us are intolerant to that.

Hope this helps and that you get some more ideas.

Great advice and exactly what I was going to say.

[mommida]

Great advice so far.

Be very diligent to gluten free. Even check the toiletry items, lip gloss, toothpaste, shampoo and conditioner. Even though you don't intend on ingesting these items, they could cause problems. Like pet foods, underarm deodorant, and gluten kisses from someone special.

Keep a food journal to see if there might be another food intolerance.

Check on your thyroid function, vitamin and nutrient levels, and gallbladder. (My gall bladder gave me problems last year after being gluten free for over 6 years~ YUCK! Not fun!)

Good Luck!