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BamBam

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BamBam Community Regular

This past week I have read almost all the threads through this whole message board. It is just amazing the symptoms and problems associated with Celiac disease. I don't remember where I read some of them but I associate with so much of the depression/mood disorders. One gal mentioned that when she eats gluten, she is a "b" to work with and that she doesn't really care about her self worth and different things like that. This past week I think I got some gluten somewhere. We attended the Bucking HOrse Sale and I purchased a polish dog with no bun, but the mustard and ketchup were off brands and I really didn't realize that there is a difference in those condiments. Anyway, when I put gluten in my body I just get depressed, have no self confidence, my insides get all twisted up, my bowels are all messed up and I just don't care about anything. I get so overwhelmed with my life and problems I just do not know what to do with myself.

Under my name for this message board I am listed as "advanced member" and I think that is so untrue, because I am learning just as much as the rest of you guys.

Thank you to all of you that respond to my messages, I appreciate all of your help and understanding when I get into one of these funks.

BAMBAM

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celiac3270 Collaborator

I posted about this, today, but Open Original Shared Link

Just hang in there, in a few days you'll feel yourself again... and we're always here to help :)

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marycubs Rookie

Hi -

I'm a newbie - just recently diagnosed. I agree that the depression/mood symptoms that I found others were experiencing were a surprise to me. It made me feel so much better about myself - because I have been dealing with depression/moodiness for some time. It's so much easier to know and understand that the physical problems are real and related to a physical cause...it's harder to understand the emotional issues that happen; it's hard not to blame yourself if you are feeling down. I've been gluten free (or trying to be) for 3 weeks now - and I definitely feel a difference in my mood - not all of the time - but on an average I feel more 'upbeat'. I think part of the issue for me is that I felt like I had lost control of my own body - and that's a stress on the mind. Now I feel like I know what the issue is and I am back in control; I can deal with this. :rolleyes:

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skbird Contributor

Well, then you probably read my comments about three weeks ago where I was totally falling apart. I hadn't been that depressed in 10 years and was so worried that mythological "bell jar" was decending on me, I was freaked out! Turned out it was a two day emotional breakdown due to a miniscule amount of gluten. I still can't believe any of it, looking back, but I was sure I was never going to make it out of that one in one piece.

It affects my gut, my mind, my joints, my head (migraines), and my attitude. What an amazingly horrible thing gluten is. Whenever I'm in the store looking at the alternate flours and I see the package of "Vital Wheat Gluten" I have to say out loud to anyone around who might hear, "EWWW look! It's the not-so-vital wheat gluten! Yuck!"

:D

Stephanie

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connole1056 Rookie

I do have to agree with celiac3270 on this one. Being an "advanced member" does not refer to anyone's knowledge , just his number of posts.

Personally, I think the labeling could be done away with as what is refers to has no inpact on what the poster has to say.

Otherwise, I hope BAMBAM is feeling much better!

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Emme999 Enthusiast

For me, the depression is the biggest symptom I have when I eat gluten. The crazy thing is - I just found this out :blink: Throughout my life I have struggled with depression/anxiety but didn't think there was any real reason for it (besides going through some rough times and having some difficult memories). But when I did the "gluten challenge" before my endoscopy, I was a total wreck! I cried soooo much and couldn't deal with anything. I felt helpless and confused and alone and worthless. Because I was eating gluten at every meal, I am absolutely positive that it is what caused these emotional problems.

Now I am happy though ;) Because *now* I know what causes it (or at least intensifies it) and *now* I know how to protect myself from these emotional rollercoasters. Yay! :D

I am also proud of myself for having survived this far - before I had any control over what was happening in my mind. I think all of us who have dealt with this "symptom" and stayed alive for as long as we have before finding out what the cause was *should* be proud of ourselves. I have so much compassion for all of you who have gone through this pain.

For me it has been lifelong - I was on anti-depressants for the first time when I was 15 years old. I tried to kill myself when I was 16. I've been on Paxil, Prozac, Wellbutrin, Effexor, and Imipramine when I was young. I've done hypnosis, therapy, support groups, etc. And now I find out that it's gluten :rolleyes: Life is wild, isn't it?

Anyway - best wishes to all of you who struggle emotionally because of celiac disease. My heart is with you.

- Michelle :wub:

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plantime Contributor

When I get glutened, I get so depressed, I start thinking about suicide. No medicine can stop that, I have to work through it and work harder not to get glutened again. I also am perimenopausal, and my hormone fluctuations cause severe depression. I am supposed to be on meds for that, but $73 a month with no insurance is $71 more than I can afford, so I muddle through. I find myself using comfort foods (most specifically, chocolate) to get through. I go for a "mental evaluation" on June 9. I don't think it will tell me anything that I don't already know.

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tarnalberry Community Regular

Yep, those gluten blues are ... "darn annoying", to put it lightly. I generally - during those times, and the nasty hormonal bits of the month - just try to turn off the "thinking about things" bit of my brain. Way harder done than said, I know, but I try to just focus on getting through the following few days before making much of anything of a decision.

It reminds me of... forgot their name... one of our member's frequent quotes "this too shall pass"

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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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