Insight On My Symptoms

[MM5079]

Hello,

I am 27 years old and was diagnosed with IBS at 21. I've been coping with this for years. About four years ago, my uncle (mom's brother) was diagnosed with Celiacs (advanced). He advised me several times to get tested for it, but I ignored him.

This January I was having somtach issues, so I went to the gastro and was diagnosed with chronic gastritis. I completely changed my diet, which unintentionally happened to be a high gluten diet. My gastritis seemed to get better with the diet, but the surrounding abdominal pain has reached an all time high. Currently, it feels like I've been punched repeatedly in the center of the abdomen. The feeling has been persistent for weeks. Over the past couple of months, I've also developed an intense tingling and sometimes burning sensation in my hands and arms. It comes on more intense when I use my hands for a while. I've lost about 30 pounds in the last few months, and I just don't feel normal. I was put on anxiety and depression meds also. I about convinced myself I had colon cancer or something terminal until I spoke to my uncle again and he told me he strongly believes it's Celiacs.

I have an upcoming appointment with the gastro, but I have already started a gluten-free diet because I am so desprate to feel normal again. I've read that it's discouraged to start the diet before being diagnosed, but I can't wait. Has anybody experienced the tingling of the hands and arms? I use my hands a lot for work and I'm afraid my hands going to give out on me. I'd appreciate any insight! Thanks!

[mushroom]

Hello,

I am 27 years old and was diagnosed with IBS at 21. I've been coping with this for years. About four years ago, my uncle (mom's brother) was diagnosed with Celiacs (advanced). He advised me several times to get tested for it, but I ignored him.

This January I was having somtach issues, so I went to the gastro and was diagnosed with chronic gastritis. I completely changed my diet, which unintentionally happened to be a high gluten diet. My gastritis seemed to get better with the diet, but the surrounding abdominal pain has reached an all time high. Currently, it feels like I've been punched repeatedly in the center of the abdomen. The feeling has been persistent for weeks. Over the past couple of months, I've also developed an intense tingling and sometimes burning sensation in my hands and arms. It comes on more intense when I use my hands for a while. I've lost about 30 pounds in the last few months, and I just don't feel normal. I was put on anxiety and depression meds also. I about convinced myself I had colon cancer or something terminal until I spoke to my uncle again and he told me he strongly believes it's Celiacs.

I have an upcoming appointment with the gastro, but I have already started a gluten-free diet because I am so desprate to feel normal again. I've read that it's discouraged to start the diet before being diagnosed, but I can't wait. Has anybody experienced the tingling of the hands and arms? I use my hands a lot for work and I'm afraid my hands going to give out on me. I'd appreciate any insight! Thanks!

Hello, and welcome to the forum.

It is not only discouraged to stop eating gluten before diagnosis; absence of gluten even makes the diagnostic tests invalid. The blood tests measure antibodies to gluten which your body stops making in the absence of gluten; the biopsy measures damage to the small intestine, which starts to heal in the absence of gluten. Depending on how much damage you have andhow long gluten-free before testing, this may or may not be enough to invalidate the test. So if you want a valid test you should resume eating gluten however painful it may be.

Weight loss, stomach issues, neurological problems, anxiety, family history; all of these are certainly suspicious for celiac. Unfortunately, it is your choice to make whether or not you want a valid diagnosis. No one can make that for you. But as I outlined above, if you want to know "for sure", that is what you have to do.

Your other choice is just to completely eliminate gluten and see how you manage. I am self-diagnosed and it is a valid option if you have no other considerations. I hoped my arthritis would clear gluten free but it didn't, but so much else cleared up for me that personally it was a good choice. Your choice is your choice. Sorry to throw it back at you, but there you are. One of life's pathway junctiions.

[MM5079]

THanks for your response! My appointment with the gastro is June 18th. I was thinking I would go gluten free for a couple of days and see how I feel, and then after I have my appointment and I'm given a date for tests, I could resume eating gluten before the test. Would that work or would it still throw off the test? I would just like to get an idea of how my body reacts without gluten.

[leadmeastray88]

THanks for your response! My appointment with the gastro is June 18th. I was thinking I would go gluten free for a couple of days and see how I feel, and then after I have my appointment and I'm given a date for tests, I could resume eating gluten before the test. Would that work or would it still throw off the test? I would just like to get an idea of how my body reacts without gluten.

Unfortunately, I wouldn't recommend that. The villi in your intestines could heal very quickly and therefore your tests would be invalid. You may be surprised and get in very early, then you wouldn't have been eating enough gluten for the testing to be accurate.

Also, only a couple of days on the diet isn't necessarily long enough to notice a difference. It takes most people weeks, even months on the diet before they start showing improvement. So really, there isn't much of a point.

To be on the safe side, you should definitely continue to eat gluten normally. You don't want to be second-guessing yourself down the road, asking "would the tests have been positive if I had eaten gluten?"

Therefore it is only safe to start the diet once all testing is complete. I'm so sorry it is so painful for you, but it is really the best bet to have accurate results. I hope you get in very quickly!

Good luck and take care

[Foxfire62]

Hello,

I am 27 years old and was diagnosed with IBS at 21. I've been coping with this for years. About four years ago, my uncle (mom's brother) was diagnosed with Celiacs (advanced). He advised me several times to get tested for it, but I ignored him.

This January I was having somtach issues, so I went to the gastro and was diagnosed with chronic gastritis. I completely changed my diet, which unintentionally happened to be a high gluten diet. My gastritis seemed to get better with the diet, but the surrounding abdominal pain has reached an all time high. Currently, it feels like I've been punched repeatedly in the center of the abdomen. The feeling has been persistent for weeks. Over the past couple of months, I've also developed an intense tingling and sometimes burning sensation in my hands and arms. It comes on more intense when I use my hands for a while. I've lost about 30 pounds in the last few months, and I just don't feel normal. I was put on anxiety and depression meds also. I about convinced myself I had colon cancer or something terminal until I spoke to my uncle again and he told me he strongly believes it's Celiacs.

I have an upcoming appointment with the gastro, but I have already started a gluten-free diet because I am so desprate to feel normal again. I've read that it's discouraged to start the diet before being diagnosed, but I can't wait. Has anybody experienced the tingling of the hands and arms? I use my hands a lot for work and I'm afraid my hands going to give out on me. I'd appreciate any insight! Thanks!

What you are possibly experiencing with the tingling sensation in your hands and feet is called "neuropathy." And guess what? It can be associated with celiac disease. Since celiac disease runs in families, it is quite possible you do have it. I know it is discouraged to go on a gluten-free diet before a biopsy is taken (assuming that's what you're going to have done...have you had bloodwork already?). If you do have celiac disease, and your intestines are severely inflamed, if you go gluten-free for a couple weeks, depending on your age and how quickly you heal, it can potentially still be seen. But if you do have it and the blunting of the villi is not severe then go on a gluten-free diet and then heal, when they biopsy, they will be unable to confirm the diagnosis.

Get your tTg and IgA levels checked out to see if you test positive. Even if results are negative, with your symptoms, it definitely warrants a biopsy.

Good luck!

[Amyleigh0007]

Don't make the same mistake I did! Going gluten free before my testing was what messed up my results. I didn't know any better though. I believe, and so does my allergist, that if I kept eating gluten my Celiac test would have been positive. I wish someone would have told me to keep eating normally until my testing was complete.