9 replies to this topic

[Shelabel]

I was recently diagnosed with non-celiac gluten intolerance. I have been eating gluten free but I have been getting sick lately. I have also been very tired (I have been taking 3 hour naps during the day for the past 4 days). I know that I am really sensitive but I have no clue what is triggering all this. Does anyone have any tips or advice on what I should do. I'v checked my toothpaste and have been using organic gluten free lotion but I don't know what else to do. Thank you!

[Jestgar]

What are you eating now that you weren't eating before?

[mommida]

It is possible that you are sensitive to some of gluten free replacement ingredients that you are eating now. I find that sorghum and I don't get along so well. Peas are known to be a higher reactive food. Pea starch is used in some of the gluten free products. Are you trying gluten free oats? For some Celiacs the protein chain is too similar and even gluten free oats are not tolerable.
Keep a food journal.

[i-geek]

I can't tolerate tapioca starch, which is in a LOT of gluten-free baked goods. That's something that might be newly added to your diet that is affecting you. There's also the possibility that you've had multiple food sensitivities for some time and you can only now detect the others once you've removed the primary problem. Also, are you eating enough to replace the calories/carbs that you normally consumed pre-gluten-free? If you don't keep a food journal, you might want to try it and see if you can correlate your symptoms to certain foods.

[T.H.]

I'd agree that it could be something other than gluten, too. But if it IS gluten?

Been kissing anyone lately who wears lipstick? Lipstick and chapstick almost always has gluten, but we don't usually think of it when we're not the ones wearing it, eh? Makeup, powders, or anything that could be on someone ELSE'S skin might be an issue if you've been kissing it.

Drywall dust has gluten, shampoos, soaps, detergents, mouthwashes (maybe) - if it can get in your mouth accidentally, or it touches stuff that gets in your mouth (like the towels that dry your dishes), it might set you off, if you are particularly sensitive.

Or, again if you're sensitive, if you still have any wooden or plastic kitchen utensils, that could do it. They are porous to gluten, and can release it back into the food you are cooking. A cast iron skillet with old seasoning could do the same, unless you reseasoned it from scratch. Or a teflon pan, if scratched, is porous to gluten as well. So it could be your cooking implements rather than the food itself, too.

[c.moriel]

Watch closely for products manufactured in the same plant as glutenous foods( cross contamination). Example: after being gluten free for 3 weeks post-diagnosis, I picked up a bag of my favorite trail mix. The ingredients listed posted no threat. But, after eating the whole bag I felt quite sick. So I read the lable more closely and discover that I had eaten a rather large portion of contaminated soy nuts. Under the allergy information where "peanuts, tree nuts, soy" . . . etc were listed, was written something to the affect "Manufactured in a facility that also processes milk, eggs, and WHEAT"!! When in doubt, start from scratch and make it yourself. Good luck. hope you feel better

[mushroom]

We commonly expect we will feel much, much better as soon as we get the gluten out of our system. Unfortunately, it is not quite that easy. Gluten has done a lot of damage which has to heal. In the meantime, your gut is extraordinarily sensitive to many things, things that it may not be sensitive to later. Lactose is the common problem because gluten has destroyed the enzyme that digests it. When you heal, you should be able to resume eating lactose products as the enzyme is restored.

If you are replacing gluten items with gluten-free substitutes, you may be ingesting a lot of products that you are not used to. Soy is used extensively in gluten free products, and is often not well tolerated by celiacs. Same goes for some of the other gluten free substitute grains - if your damaged gut is not used to these grains it may rebel.

So you have to proceed cautiously at first and not add too many different things. One at a time is a sound approach and see how you react.

Also, once the gluten is gone we often find we have other intolerances that have been masked by the body having been overwhelmed by the gluten. Once the gluten is gone these intolerances are able to be perceived. It is often recommended to keep a food and symptom log to see if you can associate a response with a certain food. Again, the simpler you can keep your diet, the easier it is. Try to eat whole, unprocessed foods from the outside of the supermarket - meat, fish, fruits, vegetables, rice, nuts, seeds. Once you can stabilize on a diet that does not upset you then you add back in one thing at a time every three or four days and see how you respond. This way you can weed out the bad actors fairly quickly. Otherwise, it is a hit or miss process - I know, I have been there, and did not follow that advice I am giving you.

Good luck on your gluten free journey.

[Mack the Knife]

I am having the same problem. I have been gluten free for five months now and some of my digestive issues got a bit better after a month or so. But they didn't go away entirely and are now getting worse.

I saw my doctor this morning and she's sending me off to get a fructose test. Apparently Fructose malabsorption http://www.nutrition...e malabsorption is the most common digestive issue these days and my gluten issue may have been masking this problem. There are a huge range of foods that have too much fructose, ie wheat, most fruits, a lot of vegetables, wine, onion, garlic, tomatoes, brown rice, beans, legumes, artificial sweetners, etc, etc, etc. Some are worse than others and it's about the accumulated load of fructose throughout the day rather than an individual food. People's individual tolerances really vary too.

My doctor also said it could be gluten cc, IBS, or a specific food intolerance. So I'll be super careful about cc from now on and we'll just eliminate the other things one by one until we work it out.

In the meantime, I think I'll cut out all grains for a while. I have rather thrown myself headfirst into gluten free baking. So I am eating a lot of flours, grains, etc that I wan't eating prior to being diagnosed

[chere1020]

I found when I tried to add in some non gluten grains that quinoa acts just like gluten for me, so anything that uses quinoa flour is a big no no for me. I also found that I have a problem with peanut butter in spread form. Yesterday I ate a lot of pineapple that is sugar coated and had a wicked reaction. The good news is once I react to it, I never want to see it again so that is out of my diet and I can afford to lose the weight right now (have lost 73lbs so far). So if you are sick still, I agree with the poster who said, eat fresh only for a while. Fresh fruit, veggies and meat and eggs and see how that works for you, if all your symptoms disappear on that diet, start adding things back slowly and keep track of what makes you sick. Once you get the hang of it, you will know what it is that does it because you wont want to eat it again.
Good luck

[Looking for answers]

It may not be diet related. I went through a very fatigued period last year and my homepathic doctor ran a adrenal fatigue test on me and found my cortisol to be extremely low. Also, my thyroid hormones were low as well. I'm finally feeling energetic after six months of treatment, new vitamins, and easier exercise then what I was doing before.