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Posted

After having to brace both wrists due to tendonitis, never ending tendonitis in my left foot, my recent food issue, and food having been stuck for a few minutes in my esophagus, i started googling again.

 

Every problem i have experienced in the last several years (except the stuck food) can be explained by celiac disease. Some of my problems, including the stuck food, can be explained by EoE.

 

The area I'm in means that this will not be looked into until I'm on my death bed, and even then the Drs would twiddle their thumbs.

 

Not sure what I'm even asking. Anyone have other ideas of what could cause the symptoms? Do i just avoid gluten and call it a day? Should i attempt to get really looked at? Cut top 8 and see if i feel better than just cutting gluten?

Posted

well if you dont think you can get good medical care, you could just try quitting the big 8 for a month and see if you feel a difference, and start adding things back in slowly and see if anything affects you. but the tendonitis type issues . . . those can take years to start healing. you could ask for the celiac test from a regular doctor just for information, but plenty of ppl test negative but still feel better without gluten. I tested negative for celiac but positive for allergies. I have been off gluten and dairy for 4 years and I keep feeling healthier.

Posted

The stuck food can also be explained by gluten as well, because that's exactly what happens to me. If I have gluten every day, or lots of gluten in one day, for the next several days I have severe heartburn, and food starts getting stuck. I was doing well with gluten for awhile, and then I started having small amounts daily, and the next thing I knew, I was choking again. I didn't even know I was having reflux! But sure enough, the problem came right back. Caffeine does this to me as well, in case you have a coffee habit.

 

You don't have to have celiac disease to be gluten intolerant. I'm fairly sure I don't have celiac (I have no problems with cross-contamination or very occasional gluten consumption), but I have lots of symptoms of intolerance--indigestion, reflux, bowel issues, joint pain. It actually took me two years of knowing I was intolerant to realize that the joint pains I was having were related to the gluten!

 

I know some people believe there are compelling reasons for a celiac diagnosis, but I don't really see any, for me, personally. I didn't go as far as the endoscopy, because that's too invasive for me when I can just cut the gluten and feel much, much better. So I would say just go ahead and cut it, and see how you feel. It takes a few weeks for gluten to clear my system enough to make a difference in my joints and my swollen, sore hands. Once I'm clear of gluten for awhile, it also takes a few weeks after having gluten for it to reappear in my joints (which is why it took me so long to figure it out :smash: ).

 

It sounds like you're already on the right track though.

Posted

I just googled celiac and tendonitis and found lots on joint pain, tendonitis and celiac.

 

I always explained my foot tendonitis because of my accessory navicular bone, but there's no deformity to explain why both of my friggen writs need to be braced right now.

 

I'll just go back to no gluten but think of it more seriously than just causing some weight gain.

Posted

Yeah, my gluten intolerance pops up specifically as pain in my hands, feet, shoulders and elbows. I've never had IBS symptoms (which is why I dismissed gluten issues from being part of why I felt so crappy for so long). As SMA said, I've never felt the need to pursue a celiac dx with biopsy. I have one genetic marker and antibodies. Plus, my body doesn't hurt when I don't eat gluten. When I have, I am walking like a woman well over 100, and every arm and hand motion hurts, within 24-48 hours.

 

I would totally cut it out and see how you feel.

Posted

I don't think you need a doctor to tell you what you already know. I would cut out gluten and be very careful even with cross-contamination and see how you feel.

 

My kids and I are gluten free.

Posted

It could be that I've not been careful so i never really healed or felt better. It seems every few months i stop improving so i start allowing more and more until I'm nearly bedridden!

 

I will start being careful with cross contamination.

Posted

i was surprised that the pain in my feet went away when i changed my diet . . . they hurt just from normal walking-around-the-house and would still hurt when i woke up in the morning. i had no idea it was related to my diet. and headaches too. it is sad, tho, to not get to eat old favorite foods. hubby and I plan some day to take a few days off just so we can go to our old favorite restaurant, the melting pot, and then i can spend the next few days in bed recovering!

Posted

After having to brace both wrists due to tendonitis, never ending tendonitis in my left foot, my recent food issue, and food having been stuck for a few minutes in my esophagus, i started googling again.

 

Every problem i have experienced in the last several years (except the stuck food) can be explained by celiac disease. Some of my problems, including the stuck food, can be explained by EoE.

 

The area I'm in means that this will not be looked into until I'm on my death bed, and even then the Drs would twiddle their thumbs.

 

Not sure what I'm even asking. Anyone have other ideas of what could cause the symptoms? Do i just avoid gluten and call it a day? Should i attempt to get really looked at? Cut top 8 and see if i feel better than just cutting gluten?

 

 

My grandmother has celiac and has since I was young. One day I decided to go gluten free to see how the change effected me. Lets just say that after reviewing my medical history and seeing the difference it has made in my life and that of my little sister its not worth waiting on the doctors. I was always very sickly. Although the trigger that made me test my theory was more related to something else the truth is clearly seen in the reversal of my infertility. 8 years ago I had a beautiful little girl. After that I lost 4 pregnancies and subsequently did not get pregnant again until 5 years after the last miscarriage. I am currently 9 months pregnant with dd2 who is due Friday. This occurred 2 years after being completely gluten free. Which is the time frame it takes for your body to reverse the effects of a lifetime of gluten consumption 6 months - 2.5 years I believe is the estimate. My little sister is 12 years younger then me and decided to try it because she literally looked like a balloon that could be popped if you touched her. Within 6 months she lost over 60 lbs and all the swelling was gone. She will be 18 in January.

 

The test they do to determine if you have celiac is a pain anyway. You can do the blood test to find out if it is affecting you. (Celiac can be in remission at various times in your life the only way to fully protect yourself is to be gluten free at all times.)

 

You can do the DNA test to see if you have the gene but then again that does not mean that you are currently affected.

 

The longest one is where they sample a portion of you intestine... again celiac has to currently be affecting you for this to be accurate.

 

So If I were you I would read up on it and decided if it's important enough to you to give up your current eating habits because 1 its not easy and 2 gluten is in more stuff then high fructose corn syrup.

 

 

If you do it and it works you tell doctors you are allergic to gluten and that you potentially have celiac. I did and they mark my records accordingly. I explained to them the research and rational behind why I feel this way. That I am not willing to eat gluten for three weeks and destroy my body so they can do a test that may or may not be accurate and they have no issue with it. I make sure they never give me anything that contains gluten and I go from there.

 

I wish you all the luck in the world.

Posted

One of my kids has EoE and the biggest pain with it is that the syptoms are delayed so keeping a food diary really didn't help. We tried going gluten free and while some of his allergy syptoms improved (he has wheat, barley, rye, oat and gluten allergies, no celiac) his EoE actually got far worse. We later learned that potatoes, sweet potatoes, corn, millet, sorghum and the like that are commonly found in GF foods happen to be some of his most potent EoE triggers. What we substituted for the gluten ended up causing more issues.

 

Granted he is more complex than average, but the fact remains that it is possible to have more than one thing going on at once and based on experience, if you are going to try to find triggers via trial and error dietary changes go slowly and carefully and keep track of what you are doing. Try to change only one thing at a time.

 

I hope you can find whatever your trigger(s) are quickly.

Posted

I have both EoE and Celiac, as well as Lupus and fibro. I'm currently off of the top 8 allergens (I'm an autoimmune disaster). What I've found is that a lot of my fibro and muscle pain is much better. I think that its worth a try, that being said, I would get the blood test for celiac before starting. The blood test is only accurate if you've been eating gluten. But there is no reason that you can't get rid of the other things starting now. But you can still have wheat as an allergen, but not have celiac.

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