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The Many Issues That Have Come Up


MacheHill

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MacheHill Newbie

I was diagnosed with celiac disease about four years ago and was diagnosed with fibromyalgia about two years ago. I recently just had a sleep study done (because of sleep problems and exhaustion) and found out I have sleep apnea and TMJ. I was just wondering if anyone else has been diagnosed with the problems along with celiac as well. I'm about at my wits end.


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love2travel Mentor

I was diagnosed with celiac disease about four years ago and was diagnosed with fibromyalgia about two years ago. I recently just had a sleep study done (because of sleep problems and exhaustion) and found out I have sleep apnea and TMJ. I was just wondering if anyone else has been diagnosed with the problems along with celiac as well. I'm about at my wits end.

Oh, I am so sorry you have to go through all this. I can relate. I was very healthy (or at leaest FELT) healthy up until 3 1/2 years ago when I was involved in an accident causing herniated discs and so on. Then I was diagnosed with IT band syndrome, degenerative disc disease, osteoarthritis and celiac disease followed by fibromyalgia. Add to the mix insomnia due to chronic pain. At my sleep study I was not even able to fall asleep at all. Insomnia really is horrible and exacerbates pain so much. Part of me is almost wondering, what next? My husband used to have a healthy wife; now I am a wife who is always in pain which really hurts both of us. Like you I also have TMJ. It just does not seem to end, I know, but there is always hope. I used to dwell on my pain and allow it to rule my life.

Whilst it is difficult for me to manage my pain (well, alright, impossible) I cope with it better than I used to. A wise chiropractor told me all about hurt versus harm. Yes, we really hurt but doing daily activities (other than obvious lifting, bending, twisting...) usually does not cause harm. I am thankful for that. He also told me I had fear avoidance which is allowing pain to prevent you from doing things and enjoying life. My pain is constant but I push myself to focus on things I am passionate about such as cooking. It may take me ages to do it but I do it. And travel - we have a house in Croatia and to get there is an absolute unbelievable nightmare due to sitting but I do it (although the pain is just unbearable and agonizing). I have to.

All these conditions have taught me a lot about myself and others. I have been forced to slow down. Therfore I do a lot of reading and have become knowledgable on many topics. I know my limitations and now say no to things/people when I need to. It has also brought my husband and I even closer together than ever which is remarkable as we married our best friend.

Remember that today is a new day with new hopes and possibilities! :D

MacheHill Newbie

Oh, I am so sorry you have to go through all this. I can relate. I was very healthy (or at leaest FELT) healthy up until 3 1/2 years ago when I was involved in an accident causing herniated discs and so on. Then I was diagnosed with IT band syndrome, degenerative disc disease, osteoarthritis and celiac disease followed by fibromyalgia. Add to the mix insomnia due to chronic pain. At my sleep study I was not even able to fall asleep at all. Insomnia really is horrible and exacerbates pain so much. Part of me is almost wondering, what next? My husband used to have a healthy wife; now I am a wife who is always in pain which really hurts both of us. Like you I also have TMJ. It just does not seem to end, I know, but there is always hope. I used to dwell on my pain and allow it to rule my life.

Whilst it is difficult for me to manage my pain (well, alright, impossible) I cope with it better than I used to. A wise chiropractor told me all about hurt versus harm. Yes, we really hurt but doing daily activities (other than obvious lifting, bending, twisting...) usually does not cause harm. I am thankful for that. He also told me I had fear avoidance which is allowing pain to prevent you from doing things and enjoying life. My pain is constant but I push myself to focus on things I am passionate about such as cooking. It may take me ages to do it but I do it. And travel - we have a house in Croatia and to get there is an absolute unbelievable nightmare due to sitting but I do it (although the pain is just unbearable and agonizing). I have to.

All these conditions have taught me a lot about myself and others. I have been forced to slow down. Therfore I do a lot of reading and have become knowledgable on many topics. I know my limitations and now say no to things/people when I need to. It has also brought my husband and I even closer together than ever which is remarkable as we married our best friend.

Remember that today is a new day with new hopes and possibilities! :D

Thanks for the kind words and wisdom. I'm only 31 and I feel like I'm falling apart! I have let myself get down and a little depressed about it all here recently. I just want to be a good mom to my three children and a good wife to my husband. But I do feel that all of these ailments have started to control my life. I used to be active and happier but it's beginning to take a toll. I'm working on each thing as it comes. But it's getting increasingly hard to see the light at the end of the tunnel.

pricklypear1971 Community Regular

I am diagnosed with Hashimotos, working on Celiac diagnosis and DH.

I also recently developed TMJ. TMJ is "inflammation", which is caused by celiac. Try TMJ massage/adjustment. Don't try surgery!

I understand exactly what you mean. I had a melt down last night over "falling apart". I just remind myself it could be worse and then try to pick myself up and do what needs doing - most of time it works. Other times I just want to sit in a corner and cry.

I try to remind myself that it will get better once I stay off gluten a while. I know other others live full and healthy lives and I MUST be one of those.

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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