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Your Symptoms...


SwtRandi

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SwtRandi Rookie

Everyone's symptoms are different. What are your symptoms when you have gluten?! Do you have Celiac or Gluten Intolerance? I am just curious what others go through when exposed. Thank you :)

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1desperateladysaved Proficient

I have experienced some or all of the following:

fatigue

dizziness

foggy mind

temperary rash

swelling

bloating

extreme hunger

lack of appetite

nausea

weakness

anxiety

depression

diarrhea

I am not sure these all stem from celiac, because I think I actually might have allergies.

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bartfull Rising Star

I'm STILL discovering symptoms I had but never realized they even WERE symptoms.

Psoriasis

Insomnia

Brainfog

Minor digestive issues

Edema in feet and ankles

Heart palpatations

Snoring

Asthma

Hair falling out

And probably some others I can't think of right now. With the exception of the asthma, every one of these symptoms is now GONE. But I included the asthma in the list because even though I still have it, I find that some of my "triggers" don't trigger it anymore. I never could go down the soap aisle in the grocery store before. Now, even though I don't like the smell, it doesn't trigger an attack anymore. And wood smoke used to be the worst. Now, it gets me a little wheezy, but not as bad as it used to.

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Persei V. Enthusiast

I have gluten intolerance and my symptoms are:

bloating

cramps

diarrhea

nausea

discomfort

I've dealt with another intolerance before so I know what the red alerts are and cut the food making me sick before the thing scalates. At first I thought it was giardiasis (and was giardiasis, too) because the symptoms would go away as soon as I restricted my diet to liquids only i.e only juice. And then when I went back to my normal diet, very hungry, I would stuff my face in bread and cookies and fall sick again in the next day. It didn't take me a month to put the pieces together, gladly, and it never went really serious.

But here and then I get ill again because restaurants here aren't gluten-free and you have to make a bet everytime you order.

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  • 2 weeks later...
SwtRandi Rookie

Thanks for responding!! I have been tested once for celiac and it came back negative. I still went on a gluten-free diet and felt somewhat better. Of course, I wasn't that educated and I am sure I ate alot that still had gluten ingredients. I then became pregnant and I could consume gluten with no issue! Yay!! Then I had my son 1/4/12. I still could consume gluten with no issues. Or so I thought. I am sure they were more hidden then I realized. I then got my gallbladder removed 6/26/12 because I was having many attacks and had tons of gallstones! I am assuming that was from gluten not digesting correctly. Is that something that could be true?! Now, I have been eating gluten and realize that I feel like crap. I think all these symptoms are gluten related. Let me know!

Fatique

Anxiety/Depression (I have been on Paxil/Celexa since 16 years old)

Bloating/Gas (silent, but deadly kind)

Constipation/Diarrhea (depends)

Nausea

Headaches/Aura Migraines (sometimes I can't see anything, but black floaters)

Arthritis Pain (all over my body- mainly legs and hands)

Hair Loss (not to the point of balding though)

Brain Fog/Lack of Concentration

Sound like it?! Should I get tested? Or just do it myself?

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kittty Contributor

Are you eating gluten right now, or did you recently stop again? Not eating gluten can give you a negative blood test (which is what happened to me).

I had all of your symptoms, minus the constipation (only had the D).

Do you always have migraine pain with the auras? When I had auras they usually occurred with no migraine pain. It's odd to not have the pain with the auras, and I'm wondering if that's a gluten thing.

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SwtRandi Rookie

Today is my #1 day of not eating gluten. I decided to go gluten-free again because I hate the way I feel. Just horrible!

No, I dont have the pain when I have the aura migraines. I will have a headache with no aura. Or aura with no pain. Weird right?!

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Aprilelayne Newbie

If you want to get officially tested you will need to continue eating gluten for now.

By removing the gluten or even going gluten-light, you may end up with a falst negative on your test. Its recommended you stay on gluten until after testing to ensure a more accurate (but not a perfect guarantee) result.

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SwtRandi Rookie

Thanks for the reply! See this is where I struggle. I need to be gluten-free in order to feel good, but I don't think I can handle much more gluten to actually get tested. Should I just do gluten-free and 'self diagnose' or actually get tested? Ahhh!! Such a struggle :(

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Making-A-Change Newbie

I have many of these symptoms as well. I had my blood test today but dont know if I should continue eating glutens until i hear from my doctor. Guess I should keep eating for awhile. I am almost positive that this is what I have to!!! I am of course, self diagnosing but I have no choice since no one else seems to know whats wrong....

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. There have been many posts on this subject on the forum, it is interesting to read of your experiences. Although I've not had TMJ, except from time to time have had a bit of mild tension in my jaw, I have had issues with my trigeminal nerve.  I read that sometimes a damaged 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.   Thank you again for your input.
    • 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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