They're Baccckkk!

[glutout]

Hi to all. Hope to get some insight here. I was diagnosed with celiac disease about 1 1/2 years ago. Been sticking to the diet religously. In the last few weeks, I have been experiencing severe dizziness. My fatigue is not getting any better and my joints are hurting again. My neck gets painful and stiff, as well as my shoulder and hip joints. Sometimes I can barely get up out of a chair. I have not been back to see my GI but have an appt. for November. The dizziness is worse when I move around or look down. It is causing me alot of anxiety when I drive because I feel like I am losing balance and it is affecting my vision. My stomach has been "gassy" but ok. When I was first diagnosed my headaches and all of these symptoms went away, as well as weight loss. Now, even with diet and working out, I have gained weight, cannot lose a pound, and some symptoms are returning. I do not believe I have been glutened or CC. I have hypoglycemia but am keeping that in check too. I have also been scatter brained and forgetful---sooo not like me! Any ideas????

[Bubba's Mom]

I get very similar symptoms from soy now. I never seemed to notice any reaction before going gluten-free.

Are you keeping a log of what you eat? It's not unusual to develope a second food intollerance after being fg.

Keeping a log may help you find your culprit. It gets tricky because some reactions to food can be delayed for a day or two.

[kareng]

This could have nothing to do with gluten or food. I would make an apppointment with a general doctor. There are lots of things that could make you dizzy, achey, etc.

[captaincrab55]

glutout, For me it was H Pylori, Dairy & now very low Vitamin D (14.6 in May & now 28)... As the Vitamin D goes up, my joints hurt less and my Blood preasure is being controled by low dose meds now... H PYLORI was the major cause of the Big D and dairy was causing gut & upper left colon pain... I am having luck eating hard cheeses in small amounts... I'm not sure if onions are an issue at this time, but will re-introduce them in the near future..

Good Luck,

[AVR1962]

I will get the same symptoms from high fructose.

[Jenniferxgfx]

Have you checked your iron? That sounds a lot like me when my iron is low.

Good luck!

[T.H.]

The dizziness could be an inner ear infection, but with all the other symptoms returning, that seems a bit of a stretch. If all of this is happening at once, then it seems that odds would be in favor of it stemming from one cause.

I know many people here have this develop due to allergies and sensitivities. I had some that seemed to pop up only after I went gluten-free. Dairy, soy, nightshades, and corn (or all grains) seem to be among the most common problems that I've seen discussed on this board.

However, truly? You said these went away on your gluten free diet, yes? And now they're back? And you are eating the same diet as before, yes?

Sadly? It could actually still be gluten cc.

A couple things to know:

1. All gluten free processed foods have a maximum allowed concentration of gluten. It's low, but it's there. This means that the more we eat of our gluten-free foods, the more gluten we ingest. It's actually possible, on a completely gluten-free diet, to eat enough gluten in our processed gluten-free foods to start reacting again. It's hard to do, for the average sensitivity level, but definitely possible.

2. The level of gluten that celiacs react to seems to differ by individual, so that it's a range rather than an absolute number for all celiacs. Sometimes, the amount that a celiac will react to is below the amount allowed in some of the gluten-free products. :-(

3. Many celiacs here start becoming more sensitive to gluten after they've been on the diet a while. In this case, the level of gluten in their processed food, which was fine before, may become too high of a gluten load for them.

So even religiously sticking to the diet, if your body has become just a little more sensitive, you could be getting too much gluten from some of your gluten free products. Most of the time that I've seen this with people here on the forum, eliminating some of their processed foods has brought about a big change. At the very least, it's an easy way to check the hypothesis - eliminate all the processed foods for a week or so and see if things feel any better.

Also, another possibility, if you're in the USA - since gluten-free foods aren't regulated here, YOU may be religiously careful about your diet, but it's possible a company you are using has not been as careful on their end. With no regulation, some companies here test all their products very carefully. Some, however, just don't add gluten 'on purpose' and don't test at all. Naturally gluten free flours, legumes, and grains can sometimes have too much gluten in them simply due to processing. If they don't test, we don't know (and the 'also processed in a facility that processes wheat' is a voluntary label, not mandatory. Many more legumes and naturally gluten-free grains would be carrying it if it were mandatory).

And with no testing, sometimes a change in processing can introduce gluten cc to a previously safe product, and we have no way of telling except how we feel, and massive calling blitzes to companies.

As an example for the processing issue, I used to buy Spectrum oils, many different types. I would be getting sick off and on, couldn't figure out why. And finally discovered that these oils are also processed on equipment lines that process wheat germ oil. When I stopped the oils, things improved.

As an example of potential problems with naturally gluten-free products. There was Open Original Shared Link within the last couple of years that tested some naturally gluten-free grains and flours. 7 out of 22 were over the regular gluten-free limit of 20 ppm (mg/kg). The worst, one of the soy flours, had 2,925 ppm of gluten.

Also, if your symptoms of dizziness happen to be a mild form of gluten ataxia, there's an important thing to know. Gluten ataxia can be present without damage to the gut. From what I read, this is one reason that researchers still argue about if it's something that is part of celiac disease, or if it's an entirely separate condition that just happens to coincide with celiac disease sometimes. In either case, having a healed gut/antibodies doesn't always correlate with having 'no gluten ataxia.'

Hope that you find the answer soon - it's miserable feeling that way, I know!

[glutout]

If this is a repeat, please accept my apology; I pressed a button and my previous reply went away!

Thank you all so much for the information!

I will start keeping a food diary again- I used to before my diagnosis.

I have an appt. with an ENT to have my ears checked for the dizziness, but it's just odd to me because after suffering with it for over 8 years, the gluten-free diet gave me some relief.

I do live in the US. I do not eat much of the mixed flours, except the occassional bread and crackers. I guess I will start having to go to clean, basic eating to see if it helps. Hopefully, we will get better labeling laws on the products.

I am familiar with the gluten ataxia and I do experience symptoms like that. I will ask my gastro, but he might not know about it.

I will also ask my doctor about the H. Pylori. I did not think about that and I have had it before. Maybe he can also check my vitamin levels, etc. I do feel better than before my diagnois, it's just I can't do anything with this stinkin' dizziness!!!

Thank you all again--you rock!!

[glutout]

Many celiacs here start becoming more sensitive to gluten after they've been on the diet a while. In this case, the level of gluten in their processed food, which was fine before, may become too high of a gluten load for them.

I find this true for me TH. Really trying to be careful about what I eat, which it is hard unless I make it myself. But a girl needs a night off now and then!!!

[Takala]

Sounds like cross contamination.

You aren't taking an over the counter acid reducer, are you ? I had a really bizarre reaction to them, which included dizziness and my eyes literally flickering. My eyeglasses optician guy figured that one out, he ought to get some sort of hero award for asking me what I was taking and connecting the symptoms to it, as he saw it happening during the exam - this is one of the reasons I'm so soured on HMO's, had all these neuro symptoms ongoing, and they wouldn't even make a good faith effort to diagnose. He explained that in a few people, any sort of chemical can cause minute changes in blood pressure in the veins/arteries in the brain, and that might be what was happening.

You can also have more than one thing going on at once. To get from "here" to "there," I have to change elevation a lot of times when driving, and that can really mess up my ears during certain times of year. When it's really bad I will take antihistamine. I have been nearly incapacitated in public areas like a turnpike/freeway restroom with some idjiot lighting up a cigarette in the next restroom stall and sneaking a smoke, if I've already been exposed to driving thru an area with a great deal of wood burning fireplace smoke in the winter.

[glutout]

Sounds like cross contamination.

You aren't taking an over the counter acid reducer, are you ? I had a really bizarre reaction to them, which included dizziness and my eyes literally flickering. My eyeglasses optician guy figured that one out, he ought to get some sort of hero award for asking me what I was taking and connecting the symptoms to it, as he saw it happening during the exam - this is one of the reasons I'm so soured on HMO's, had all these neuro symptoms ongoing, and they wouldn't even make a good faith effort to diagnose. He explained that in a few people, any sort of chemical can cause minute changes in blood pressure in the veins/arteries in the brain, and that might be what was happening.

You can also have more than one thing going on at once. To get from "here" to "there," I have to change elevation a lot of times when driving, and that can really mess up my ears during certain times of year. When it's really bad I will take antihistamine. I have been nearly incapacitated in public areas like a turnpike/freeway restroom with some idjiot lighting up a cigarette in the next restroom stall and sneaking a smoke, if I've already been exposed to driving thru an area with a great deal of wood burning fireplace smoke in the winter.

I take a Tums every once in a while but not very often. That is another thing, I never got heartburn, but not on occassion, I do.

I don't change much in elevation when I drive, but one time I did travel down a winding hill, I heard what sounded like a bottle rocket shoot from one ear to the other, and couldn't see or hear for just a second. That has only happened one time and never received an explanation....