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glutout Rookie

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???? :blink:

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Bubba's Mom Enthusiast

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.

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kareng Grand Master

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.

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captaincrab55 Enthusiast

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,

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AVR1962 Collaborator

I will get the same symptoms from high fructose.

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Jenniferxgfx Contributor

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

Good luck!

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T.H. Community Regular

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!

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glutout Rookie

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

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!!! :angry:

Thank you all again--you rock!! :D

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glutout Rookie
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!!! :D

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Takala Enthusiast

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.

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glutout Rookie

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....

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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