Newbie Looking For Support
SunnyLu87
Posts: 2
Hello Group,
I hope it's okay to join this group since I'm not quite sure I'll have to stick with gluten free permanently. I also hope you don't mind the long post and that there are some willing to read it and help out. I promise I'm going somewhere with this. I'm not presently diagnosed with Celiac or any food allergies. I actually just had blood drawn for a celiac test this week and I have to wait until next Wednesday to get the results. My rheumatologist advised me to cut back on gluten in the mean time.
I'm not too confused by what to eat at this point. I already go for a lot of whole foods, and outside of that the most helpful thing I've found is the "Shop Well" app on smartphones which has helped me avoid a lot of things I didn't know contained wheat or gluten. Does anyone know if it's fairly trustworthy? You know, if I end up really needing to rely on it.
Basically I've had unexplained health problems for years, but I won't go too into detail, I'll just start with the past few months. I just want to say first that I just turned 26, and when I'm not experiencing a flare-up of symptoms I keep active, eat mostly healthy with lots of whole foods including fruits, veggies, whole grains, nuts, healthy fats, some meat, and some junk. I regularly take a pretty solid regimen of vitamins. All of this I have to do because if I don't put a great deal of effort into my health, I'm a zombie.
Since October I've been very sick so I've actually been dealing with the doctors trying to find an answer. I just turned 26 and I have osteoarthritis and severe complex migraines with debilitating auras (or possibly focal seizures) which have been taking up 50% of each month since October. My fingers also curl up sometimes and look deformed, and I get Raynaud's phenomenon. I also have severe persistent fatigue, numbness and tingling in hands, legs & feet, various rashes including a facial rash on my checks down my neck and onto my chest, a numb patch of tissue on my left hip that is just constantly numb now.... and various other little bothers. I have some digestive issues like occasional nausea and (how do I say this politely)... intestinal bleeding (for which I had a colonoscopy at the age of 19 & they said I was okay although I had some polyps or ulcers or something... oh gosh, I don't remember. If only I was more mature at that age and listened more intently)... The migraines are now partially under control thanks to Topamax and the arthritis pain is partially under control thanks to Mobic. However, my doctors are still searching for an underlying cause to these flare-ups because all of my symptoms come on at once together in waves.
So far I've had an MRI of my brain which was all clear and they've ruled out lupus and rheumatoid arthritis and are now testing for celiac. I guess my question is... has anyone who eventually ended up with a celiac or gluten intolerance diagnosis experienced symptoms like this prior to their diagnosis? I know the doctor is the only one who can give me the final answer, but each time they do another blood test I swear the wait is taking forever. The more I turn it over in my head the more I think celiac or gluten intolerance would make a lot of sense. It's not that I want it. I just want an answer.
Please feel free to post or message anything you think might be helpful even if it's just a hang in there or a chill out
I hope it's okay to join this group since I'm not quite sure I'll have to stick with gluten free permanently. I also hope you don't mind the long post and that there are some willing to read it and help out. I promise I'm going somewhere with this. I'm not presently diagnosed with Celiac or any food allergies. I actually just had blood drawn for a celiac test this week and I have to wait until next Wednesday to get the results. My rheumatologist advised me to cut back on gluten in the mean time.
I'm not too confused by what to eat at this point. I already go for a lot of whole foods, and outside of that the most helpful thing I've found is the "Shop Well" app on smartphones which has helped me avoid a lot of things I didn't know contained wheat or gluten. Does anyone know if it's fairly trustworthy? You know, if I end up really needing to rely on it.
Basically I've had unexplained health problems for years, but I won't go too into detail, I'll just start with the past few months. I just want to say first that I just turned 26, and when I'm not experiencing a flare-up of symptoms I keep active, eat mostly healthy with lots of whole foods including fruits, veggies, whole grains, nuts, healthy fats, some meat, and some junk. I regularly take a pretty solid regimen of vitamins. All of this I have to do because if I don't put a great deal of effort into my health, I'm a zombie.
Since October I've been very sick so I've actually been dealing with the doctors trying to find an answer. I just turned 26 and I have osteoarthritis and severe complex migraines with debilitating auras (or possibly focal seizures) which have been taking up 50% of each month since October. My fingers also curl up sometimes and look deformed, and I get Raynaud's phenomenon. I also have severe persistent fatigue, numbness and tingling in hands, legs & feet, various rashes including a facial rash on my checks down my neck and onto my chest, a numb patch of tissue on my left hip that is just constantly numb now.... and various other little bothers. I have some digestive issues like occasional nausea and (how do I say this politely)... intestinal bleeding (for which I had a colonoscopy at the age of 19 & they said I was okay although I had some polyps or ulcers or something... oh gosh, I don't remember. If only I was more mature at that age and listened more intently)... The migraines are now partially under control thanks to Topamax and the arthritis pain is partially under control thanks to Mobic. However, my doctors are still searching for an underlying cause to these flare-ups because all of my symptoms come on at once together in waves.
So far I've had an MRI of my brain which was all clear and they've ruled out lupus and rheumatoid arthritis and are now testing for celiac. I guess my question is... has anyone who eventually ended up with a celiac or gluten intolerance diagnosis experienced symptoms like this prior to their diagnosis? I know the doctor is the only one who can give me the final answer, but each time they do another blood test I swear the wait is taking forever. The more I turn it over in my head the more I think celiac or gluten intolerance would make a lot of sense. It's not that I want it. I just want an answer.
Please feel free to post or message anything you think might be helpful even if it's just a hang in there or a chill out
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Replies
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I did not experience symptoms like yours, not do I know anybody that did. I am thinking it is unlikely to be Celiac. That said I do know people that had issues nobody else had and when found to be Celiac and then GF those issues went away. For example my younger brother has some type of heart issue that he never experiences anymore unless he gets glutened, so you never know.
A negative blood test does not mean you do not have Celiac whereas a positive almost always does. Is it in your family (it is hereditary)? I hope you get it all figured out0 -
Nobody in my family is diagnosed with Celiac. My aunt (mother's sister) recently found out she was gluten intolerant. My Mom suspects she might be but hasn't gotten it checked out (I don't want to go into too much detail there since it's not own situation). I never thought that would be suggested by my doctor. I had previously thought it was pretty rare.
I am just wondering why you say it is unlikely to be Celiac. Because it is rare? Or because my symptoms don't sound anything like it?
I guess anything that sounds neurological in my symptoms should probably be rolled into a big ball and rolled into a corner labeled "migraine stuff" since that's what my doctor is going with and the medicine seems to be controlling them. Then that still leaves a lot left unexplained. Especially the rashes, stomach issues, fatigue, and inability to lose weight no matter what (literally no matter what)0 -
I said unlikely as your symptoms do not seem Celiac. But like I said that means nothing really. Celiac is 1 in 133 people. In my department at work we hsve about 137 people. 4 of us are Celiac so we defy the odds 0
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Wow. Given all you have going on I'd have guessed a Fluoroquinolone interaction.
Hope going GF helps, you sound like you have a lot going on.0 -
Have they done another colonoscopy lately? And do you (sorry for the personal question) have diarrhea often? Your symptoms sound more like Crohns or Colitis, not celiac. Celiac doesn't cause bleeding. IBD has "extra intestinal manifestations" which include hand tingling, headaches/migraines, arthritis....a huge lost of things. It wouldn't hurt to ask your doctor if it's a possibility.0
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I did not experience symptoms like yours, not do I know anybody that did. I am thinking it is unlikely to be Celiac. That said I do know people that had issues nobody else had and when found to be Celiac and then GF those issues went away. For example my younger brother has some type of heart issue that he never experiences anymore unless he gets glutened, so you never know.
A negative blood test does not mean you do not have Celiac whereas a positive almost always does. Is it in your family (it is hereditary)? I hope you get it all figured out
Before I got rediagnosed I was being treat for arthritis at the age of 16. At that point it was mainly in my hip and elbows although I would also get bone pain in other areas, The GI symptoms showed up later - mainly nausea. This is when the doctors twigged that I had been diagnosed with Coeliacs disease at the age of 2 but it was the time they though you would grow out of it and at the age of 7 spent a week in hospital reintroducing gluten. since being gluten free my joint/ bone pain is almost 100% better and not needed any treatment for it.0 -
Sounds like you have had a tough time of it. I have celiac and have been GF for about 4 years now. I do occasionally get tingling sensations you describe but I was told by a doctor ( who also has celiac herself) that it can be from a vitamin B deficiency. I do find that when I take my supplements the tingling goes away. The only way to know for sure if it is celiac is to get an upper Gi with a biposy to test the damage to your upper intestine. I would not rely on the blood tests being that, alot of doctors are not fully educated on the proper testing and the possiblity of false negative results. As for your weight issues, I was underweight before diagnosis. Since being GF I have "filled in" a bit , and that is my reason for being on these boards. If I can help with food choices let me know. I know Kraft and Unlever that will list any gluten in their products. God Bless!:flowerforyou:0
