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lisa74

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lisa74 Newbie
lisa74
Posted

Hi all, I keep landing on these forums when seaching gluten questions online. :) I've found a lot of useful info on here and decided to join. I was diagnosed with fibromyalgia awhile back, but I didn't feel I had it. I didn't have any of the tender points and I think after a year of testing for every thing else, it was a blanket diagnosis. Yes, I have all the symptoms, but after a year's worth of research, I understand fibro to be a symptom itself, mostly for deficiencies in the body it seems. So I acknowledged that I do have the symptom of fibro, tried all the drugs they prescribed, none worked and in fact made me feel worse, so weaned off them, now trying to find natural ways to heal myself.

I stumbled upon the gluten free remedy while researching esophagael issues that I was exeriencing due to esophagitis and a hiatal hernia. I was in pain in my chest for over a year with bad spasms that came about every five minutes, no meds worked for it, no antacids, nothing. I stopped eating the trigger foods and was living on chicken noodle soup and saltine crackers not realizing that was making it worse. Somehow I came across cutting out gluten for stomach and esophagael issues even though my stomach felt fine. After an endosopy I discovered the hiatal hernia, esophagitis, and mild gastritis. I decided to cut gluten out. 2 days after no gluten, the pain in my chest went away completely. I was so amazed but was scared to be happy about it, afraid I was going to jinx myself!

I don't think I have celiac disease but I think I'm gluten intolerant. After no gluten, my memory is better, no more brain fog, I have more energy, I exercise more, I've lost weight. However, I still do get pain in my arms and all joints, but not in my chest thank goodness. I am about to try vitamin D, but I have a blood test coming up for that and I want to know if I'm low on it before I begin taking it so that I'll know if it has been contributing to my overall pain. I have arthritis in my neck, so it may just be arthritis in my joints as well, it runs in my family.

Logically, I think gluten was causing my esophagael issues. Why do I belive this? - Because I purposely ate something with gluten in it a few days ago and my chest pain came roaring back. It took me two days to feel better after that with no gluten again. I felt HORRIBLE. It took two days to get out of my system and to feel better again.

Has anyone been diagnosed with fibromyalgia here and then felt better after no gluten?

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mushroom Proficient
mushroom
Posted

Fibromyalgia is a pretty common diagnosis in those who are gluten intolerant. It was a very early one for me. Some celiacs continue to carry the diagnosis along with their celiac diagnosis; I am not one of them. My arthritis in my neck, shoulders, hands and feet really is a rheumatoid arthritis, actually psoriatic arthritis since the psoriasis appeared, which is an RF-negative arthritis. I take injections for it when it flares, but if I eat gluten free and nightshade free I can keep pretty reasonable control of the joints and the skin. And needless to say, I DO eat strictly gluten free.

I believe you completely that gluten causes your symptoms, and I also believe with time gluten free that your pain issues might resolve to a great extent. It took me 2-3 years to reach that point. In the past eight months I have taken injections for only one month! And that could well have been because the hosptal food I was fed was not entirely gluten free :rolleyes:

Is your doctor going to test all your nutrient levels in this blood test? A, B's, D, E, K; potassium, magnesium, copper, zinc, iron/ferritin. and your thyroid function, because these are all things gluten can cause to be low. Good luck with your testing and let us know how it goes.

Welcome to the board; I am glad you decided to join us :)

keeponsingin Newbie
keeponsingin
Posted

I went to the doctor a few months ago, completely unrelated to my issues with gluten, and I found out that I'm Vit D deficient. Then when I started researching celiac disease/GI more, I saw that it is common to have deficiencies such as Vit D along with it. Hmm...

mushroom Proficient
mushroom
Posted

I went to the doctor a few months ago, completely unrelated to my issues with gluten, and I found out that I'm Vit D deficient. Then when I started researching celiac disease/GI more, I saw that it is common to have deficiencies such as Vit D along with it. Hmm...

A diagnosis of gastritis and esophagitis is a diagnosis of inflammation in the intestinal tract. The first signs of celiac are ....

inflammation!

lisa74 Newbie
lisa74
Posted
  • Author

Thanks for the welcome, mushroom! My doc doesn't like doing blood tests without specific reasons. She doesn't think that I'm gluten intolerant, she keeps sticking to the fibro diagnosis, and won't order additional blood testing since my endoscopy didn't show celiac's, only mild gastritis and pretty bad esophagitis. Even after I told her that I no longer have esophagael pain after no gluten, she won't go there. I basically had to beg her to order the vit D test. I'm anemic as well so she always sticks with the ferritin, transferrin, CBC, etc. My Bs have all been tested and I was a little low on B12 but I brought it back up, I also brought my ferritin back up as it was way low. All my other Bs are above range. I just started taking magnesium nightly so I hope that helps too.

It gives me hope knowing that the pain from your arthritis lessened after a couple of years of no gluten. I noticed all the stuff that you don't consume on your siggie. I think it's great. I haven't had caffeine in two years now and I'm trying to cut down on corn as well unless it's completely organic and gmo free. Difficult to find it that way unless I grow it myself but I don't have room for that in my yard. I still eat potatoes made on the grill and sweet potatoes but plan to cut out regular potatoes someday. Most of my carbs are from fruits.

Thanks for taking the time to respond, I appreciate it!

Fibromyalgia is a pretty common diagnosis in those who are gluten intolerant. It was a very early one for me. Some celiacs continue to carry the diagnosis along with their celiac diagnosis; I am not one of them. My arthritis in my neck, shoulders, hands and feet really is a rheumatoid arthritis, actually psoriatic arthritis since the psoriasis appeared, which is an RF-negative arthritis. I take injections for it when it flares, but if I eat gluten free and nightshade free I can keep pretty reasonable control of the joints and the skin. And needless to say, I DO eat strictly gluten free.

I believe you completely that gluten causes your symptoms, and I also believe with time gluten free that your pain issues might resolve to a great extent. It took me 2-3 years to reach that point. In the past eight months I have taken injections for only one month! And that could well have been because the hosptal food I was fed was not entirely gluten free :rolleyes:

Is your doctor going to test all your nutrient levels in this blood test? A, B's, D, E, K; potassium, magnesium, copper, zinc, iron/ferritin. and your thyroid function, because these are all things gluten can cause to be low. Good luck with your testing and let us know how it goes.

Welcome to the board; I am glad you decided to join us :)

1desperateladysaved Proficient
1desperateladysaved
Posted

." I was so amazed but was scared to be happy about it, afraid I was going to jinx myself!" Lisa.

Yeah, I keep telling me not to get giddy. It tends to set you up for a big fall later.

Get well, for real and then get giddy,

Diana

keeponsingin Newbie
keeponsingin
Posted

A diagnosis of gastritis and esophagitis is a diagnosis of inflammation in the intestinal tract. The first signs of celiac are ....

inflammation!

Sorry, but I don't follow...I went to my doctor about asthma and my terrible immune system, and that's why they tested for Vit D.

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nvsmom Community Regular
nvsmom
Posted

Anemia from low ferritin and low B12 is pretty common among celiacs, as is the low D... That's more symptoms on top of your joint pain.

I thought I wasn't a celiac either, until I ordered a Biocard home (ttg IgA) test and found out I was. LOL I would push to get tested if you think that will help you stick with the gluten-free diet for life.

Joint pain is one of my major symptoms (along with migraines and stomach aches and bloating) but it has taken over 6 months for me to see any improvement in my joints. In fact my joint pain became much worse in my 2nd and 3rd month gluten-free, so much so that I doubt I would have stuck with the gluten-free diet if that was my main symptom. Knowing I had celiac made it easier for me to wait it out and stay gluten-free. I'm glad I did now since I feel much better.

If you know you can stick to the gluten-free diet for life, then skip the tests, but if you think you could have doubts if you don't see a quick improvement, then I would push for the tests.

Best of luck to you. :)

mushroom Proficient
mushroom
Posted

Sorry, but I don't follow...I went to my doctor about asthma and my terrible immune system, and that's why they tested for Vit D.

Sorry, that was Lisa74 who started this thread who had those symptoms.

keeponsingin Newbie
keeponsingin
Posted

Sorry, that was Lisa74 who started this thread who had those symptoms.

Oh. I got confused because you quoted me.

mushroom Proficient
mushroom
Posted

Oh. I got confused because you quoted me.

I did so in error, thinking it was Lisa's post. Again, sorry :(

keeponsingin Newbie
keeponsingin
Posted

I did so in error, thinking it was Lisa's post. Again, sorry :(

No worries :) It happens.

alelas1968 Newbie
alelas1968
Posted

I had the chest pain issues as well mine were so bad that i thought i was gonna stop breathing. I actually had to pull over aftet eating at a . Now that i totally cut out gluten i feel so much better.

lisa74 Newbie
lisa74
Posted
  • Author

Thank you, nvsmom! Yes, I think I can stick to gluten free for the rest of my life because I don't ever want to experience that chest pain again, it would get really severe sometimes. It would be interesting to do a biocard test for the heck of it. Is it expensive? I see the gastro doc this week so maybe she'll order the ttg/IgA for me. I'm glad you are feeling much better now!

Anemia from low ferritin and low B12 is pretty common among celiacs, as is the low D... That's more symptoms on top of your joint pain.

I thought I wasn't a celiac either, until I ordered a Biocard home (ttg IgA) test and found out I was. LOL I would push to get tested if you think that will help you stick with the gluten-free diet for life.

Joint pain is one of my major symptoms (along with migraines and stomach aches and bloating) but it has taken over 6 months for me to see any improvement in my joints. In fact my joint pain became much worse in my 2nd and 3rd month gluten-free, so much so that I doubt I would have stuck with the gluten-free diet if that was my main symptom. Knowing I had celiac made it easier for me to wait it out and stay gluten-free. I'm glad I did now since I feel much better.

If you know you can stick to the gluten-free diet for life, then skip the tests, but if you think you could have doubts if you don't see a quick improvement, then I would push for the tests.

Best of luck to you. :)

lisa74 Newbie
lisa74
Posted
  • Author

Thanks again for the info! The reason I haven't is because celiac's didn't show up during my endoscopy so I thought that was a definite no. I definitely do not want to start eating gluten again to be able to test for it. I can't do it, I've been sick for too long and finally feeling better and getting back in shape. If the gene testing doesn't involve eating gluten, then I might ask for that at the gastro doc this week.

A diagnosis of gastritis and esophagitis is a diagnosis of inflammation in the intestinal tract. The first signs of celiac are ....

inflammation!

lisa74 Newbie
lisa74
Posted
  • Author

Glad you feel better too! Was it your esophagus? Sometimes it felt like a knife was sticking in my chest, other times like a hard squeeze, other times just a pounding ache and it was never ending, it came every five minutes. I'm so thrilled to feel better now. I'm still kind of in shock about how not eating gluten fixed it!

I had the chest pain issues as well mine were so bad that i thought i was gonna stop breathing. I actually had to pull over aftet eating at a . Now that i totally cut out gluten i feel so much better.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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