Many Celiac Symptoms...

[Elizabeth5220]

I've posted earlier about severe problems with dry eyes and the possiblity of that issue being associated with gluten. I also have a number of other related symptoms including neuropathy in my feet, sleep problems, arthritis (bi-lateral hip replacements at age 45 and 47), chronic depression, itchy skin, erosion of dental enamel, potassium deficiency, brain fog ( ), and I have Grave's Disease.

However, I've never really had many GI problems. My health insurance is not great and my new career (commission only sales) is not taking off so I really can't afford testing. I've been gluten-free for 16 days now and I think my eyes are improving a little.

Can you have gluten intolerance/celiac without GI symptoms?

[Lisa]

I've posted earlier about severe problems with dry eyes and the possiblity of that issue being associated with gluten. I also have a number of other related symptoms including neuropathy in my feet, sleep problems, arthritis (bi-lateral hip replacements at age 45 and 47), chronic depression, itchy skin, erosion of dental enamel, potassium deficiency, brain fog ( ), and I have Grave's Disease.

However, I've never really had many GI problems. My health insurance is not great and my new career (commission only sales) is not taking off so I really can't afford testing. I've been gluten-free for 16 days now and I think my eyes are improving a little.

Can you have gluten intolerance/celiac without GI symptoms?

Hi Elizabeth!

Believe it or not, GI issues are not a primary symptom of Celiac Disease, just the one that keeps most of us housebound for a while.

Hope you continue to improve.

[ciamarie]

<stuff snipped>

I've been gluten-free for 16 days now and I think my eyes are improving a little.

Can you have gluten intolerance/celiac without GI symptoms?

Personally, I would say yes, absolutely. I had at least a couple outbreaks of DH and other symptoms like anxiety, fatigue, and very painful right knee that I didn't associate with wheat / gluten at all. That was years before I did start having heart burn for a while before I stopped eating wheat. I didn't associate that either, but it was nice that it went away. Then just this year (before going gluten-free) was when I had my first real major spasm of pain after eating, and didn't relate that to gluten either.

[mushroom]

Actually, you can have celiac without being aware of any symptoms whatsoever. And then after you go gluten free, you suddenly realize that X no longer happens and Y has gone away and you realize they were symptoms after all. Many have no GI symptoms. Many are shocked when they are diagnosed acidentally when the docs were actually looking for something else entirely..

[Elizabeth5220]

Thank-you everyone!

There's so much uncertainty in the beginning. My honey made chili on Sunday and as an afterthought I dug through the garbage to read a label and found traces of wheat in the canned tomatoes he used! Ugh! Now we have a huge pot of chili and he's the only one eating it. I'm afraid to eat it and I don't want to tell him because I know he'll think I'm being silly. He worked so hard to make it and I feel bad...

[Lisa]

Thank-you everyone!

There's so much uncertainty in the beginning. My honey made chili on Sunday and as an afterthought I dug through the garbage to read a label and found traces of wheat in the canned tomatoes he used! Ugh! Now we have a huge pot of chili and he's the only one eating it. I'm afraid to eat it and I don't want to tell him because I know he'll think I'm being silly. He worked so hard to make it and I feel bad...

What was the brand of tomatoes he used in the chilli, if you remember? Maybe, it's ok for you to eat? Most cans of tomatoes do not contain wheat, but maybe he used something I'm not familiar with.

[Elizabeth5220]

What was the brand of tomatoes he used in the chilli, if you remember? Maybe, it's ok for you to eat? Most cans of tomatoes do not contain wheat, but maybe he used something I'm not familiar with.

It was the Walmart "Great Value" brand...label said 'may contain traces of wheat and soy'...

[Lisa]

It was the Walmart "Great Value" brand...label said 'may contain traces of wheat and soy'...

That, generally, is a CYA statement, unless you are a hyper sensitive, and it's way too soon for you to determine that. Many companies are listing that because they do not test. It's a law suit crazy world we live in.

I generally, am not concerned unless wheat is a specific ingredient listed.

[Elizabeth5220]

That, generally, is a CYA statement, unless you are a hyper sensitive, and it's way too soon for you to determine that. Many companies are listing that because they do not test. It's a law suit crazy world we live in.

I generally, am not concerned unless wheat is a specific ingredient listed.

Thanks, Lisa. I will have a small bowl tonite!

[mamaw]

I agree with the other posters. My two cents is with Grave's Disease you can get very dry , burning itchy, puffy eyes... I have Grave's plus an off shoot from Grave's , called disthyroid orbitopathy, I use Restasis twice a day plus Genteal eye drops through out the day.Sometimes that isn't even enough ....My right eye now is about 1cc. larger than my left.(protuding) They do surgery for this & I'm concerning it but I worry about infection ...

So I agree gluten can cause a zillion reactionsbut Grave's can as well....

[mushroom]

I agree that there is a huge difference between "may contain" and "contains". I generally do not worry myself overly about the "mays" because if it is there it is likely to be a very small amount of cc.

[BabsV]

Can you have gluten intolerance/celiac without GI symptoms?

I had brain fog, severe and rapid weight loss, achy joints (especially knees and ankles), horrible insomnia, anxiety plus GERD (reflux) and eventually abdominal pain which became severe and debilitating. None of my doctors wanted to believe it might be Celiac Disease because I didn't have the 'traditional' bloating, C and/or D, etc. They finally did the blood work as tests of exclusion to prove I didn't have it and imagine their surprise when the tests came back positive!

[AVR1962]

Elizabeth, yes you can have issues that are not evident GI issues, I was one of them. Just what I have gathered from other people who have dealt with the same, conventional testing would be hard to prove this was celiac. I have been gluten-free for 8 months now and I can tell you that it was the problem. I would never have guessed it at the time. I have family members who are gluten intolerent and I did not have the same systoms as they did.

In my case, I got real sick. It was creeping up on me little by little and I was asking docs are being so tired, why my eyes were doing crazy things and not only did no one have an answer but no further testing was done either. I was dealing with double vision, blurred vision and eyes doc said eyes were good and suggested I be tested for diabetes, had that test and it was negative. I was given a prescript for prenatal vits since my energy levels were low and doc said it was probably normal aging. I was your age when all this was going on.

It was not until my body finally gave out on me and I got so sick that docs started running more tests and I think they tested me for about everything under the sun except celiac. I didn't have the knoweldge or the rights words to use and did not understand then what was happening to my body but I had neuropathy issues. My feet were burning. I had pins and needles poking in my toes, in between my fingers and in even in my eyes from time to time, docs could not explain it. The pin and needles stuff had been going on for 3 years at this point but it wasn't all the time, just occasionally. When I mentioned it to docs their response was, 'hum."

When I got sick my blood calcium was elevated beyond and docs thought it was related to my kidney stones, lots of tests ran. The thought was that this was all due to a bad prathyroid gland. It was supposed to be an easy fix, remove the gland and all my symptoms should hen go away. Tests showed I had bone loss and they felt it was because the gland was robbibng calcium from my bones which happens in parathyroidsim.

This was taking months and I was not getting better and a family member asked me to try a gluten-free diet. In 3 weeks I knew that was the problem. On the diet my calcium went from high to borderline low which meant that the glands wasn't the problem afterall. Calcium has never shot up again. Then docs realized that the bone loss was due to something else, labs showed deficiencies everywhere. I have no idea why this had not been caught before.

I have been supplementing now for just over 5 months and the burning in my feet is gone, no more pins and needles, no more brain fog, I have regained my balance, my blood pressure went into normal range. I am now sleeping at night without sleep aides. My stomach and intestines were wrecked and I had no clue.

Get this though, after all this and this took something like 7 months of testing from the point things got real bad, docs finally put the pieces together and diagnosed me with celiac. All my vits and nutrition I learned myself just by reading.

This group hs been a life saver for me, a wealth of info. Thank goodness for the internet and modern technology, otherwise I think I would probably be in a wheelchair by now.

Keep with the gluten-free diet but read to figure out what ailes you and see if you can make a difference for yourself.

[Reba32]

with dry eyes and dental problems, it could also be Sjogren's. Have you been tested for any autoimmune diseases besides Grave's? I had Grave's (it's in remission now), I have Celiac, and psoriasis. I have also been tested for several others, all results were "inconclusive" though.

[Elizabeth5220]

Elizabeth, yes you can have issues that are not evident GI issues, I was one of them. Just what I have gathered from other people who have dealt with the same, conventional testing would be hard to prove this was celiac. I have been gluten-free for 8 months now and I can tell you that it was the problem. I would never have guessed it at the time. I have family members who are gluten intolerent and I did not have the same systoms as they did.

In my case, I got real sick. It was creeping up on me little by little and I was asking docs are being so tired, why my eyes were doing crazy things and not only did no one have an answer but no further testing was done either. I was dealing with double vision, blurred vision and eyes doc said eyes were good and suggested I be tested for diabetes, had that test and it was negative. I was given a prescript for prenatal vits since my energy levels were low and doc said it was probably normal aging. I was your age when all this was going on.

It was not until my body finally gave out on me and I got so sick that docs started running more tests and I think they tested me for about everything under the sun except celiac. I didn't have the knoweldge or the rights words to use and did not understand then what was happening to my body but I had neuropathy issues. My feet were burning. I had pins and needles poking in my toes, in between my fingers and in even in my eyes from time to time, docs could not explain it. The pin and needles stuff had been going on for 3 years at this point but it wasn't all the time, just occasionally. When I mentioned it to docs their response was, 'hum."

When I got sick my blood calcium was elevated beyond and docs thought it was related to my kidney stones, lots of tests ran. The thought was that this was all due to a bad prathyroid gland. It was supposed to be an easy fix, remove the gland and all my symptoms should hen go away. Tests showed I had bone loss and they felt it was because the gland was robbibng calcium from my bones which happens in parathyroidsim.

This was taking months and I was not getting better and a family member asked me to try a gluten-free diet. In 3 weeks I knew that was the problem. On the diet my calcium went from high to borderline low which meant that the glands wasn't the problem afterall. Calcium has never shot up again. Then docs realized that the bone loss was due to something else, labs showed deficiencies everywhere. I have no idea why this had not been caught before.

I have been supplementing now for just over 5 months and the burning in my feet is gone, no more pins and needles, no more brain fog, I have regained my balance, my blood pressure went into normal range. I am now sleeping at night without sleep aides. My stomach and intestines were wrecked and I had no clue.

Get this though, after all this and this took something like 7 months of testing from the point things got real bad, docs finally put the pieces together and diagnosed me with celiac. All my vits and nutrition I learned myself just by reading.

This group hs been a life saver for me, a wealth of info. Thank goodness for the internet and modern technology, otherwise I think I would probably be in a wheelchair by now.

Keep with the gluten-free diet but read to figure out what ailes you and see if you can make a difference for yourself.

Thank-you for this...funny thing...my blood calcium levels have been high as well.

I've had so many frustrations with the medical community over the years. When I was using a cane to walk at the age of 44 and having horrible referred pain at night, I was given oxycontin and told to wait at least 10 years for surgery. When I was diagnosed with Grave's and my thyroid was ablated, I was put on synthetic thyroid replacment meds for life and despite having continued hypo symptoms I was told to deal with it. When depression struck in my mid-40s I was put on a revolving cocktail of antidepressants that never worked. The list goes on and on...

So I think I may have stumbled upon something with this whole gluten thing! Myself and all of you wonderful, supportive people in Celiac-cyberville.

...and I didn't eat the chili!

[AVR1962]

Thank-you for this...funny thing...my blood calcium levels have been high as well.

I've had so many frustrations with the medical community over the years. When I was using a cane to walk at the age of 44 and having horrible referred pain at night, I was given oxycontin and told to wait at least 10 years for surgery. When I was diagnosed with Grave's and my thyroid was ablated, I was put on synthetic thyroid replacment meds for life and despite having continued hypo symptoms I was told to deal with it. When depression struck in my mid-40s I was put on a revolving cocktail of antidepressants that never worked. The list goes on and on...

So I think I may have stumbled upon something with this whole gluten thing! Myself and all of you wonderful, supportive people in Celiac-cyberville.

...and I didn't eat the chili!

Oh Elizabeth, you have been thru an aweful and like so many of here, without the proper medical attention. Have your calcium levels gone back down or are you still battling? The high levels put me on an emotional roller coaster, I woud want to just hide, my emotions were uncontrollable. I thought I had the early signs of menopause but all mt OBGYN stuff was checked and I was good.

I sure do hope this is the answer for you. I can say it took me awhile and many times I questioned that it was the complete answer. Because docs were so sure before that it was my parathyroid I have asked them every couple months to retest my calium and the gland itself and there is no indication to doubt the diagnosis. Slowly everything went away, even my heart palpitations that I had for years. I am on a good amount of vits that have helped me alot, espcially with my neuro issues and I am still eating a low acidic diet trying to regain my bone loss.

It's hard to believe that wheat could cause so much damage to the body. For me, it was like getting low doses of arsenic poisoning, my body was slowly being eaten away.

Please keep us informed on your progress!!

[Elizabeth5220]

Oh Elizabeth, you have been thru an aweful and like so many of here, without the proper medical attention. Have your calcium levels gone back down or are you still battling? The high levels put me on an emotional roller coaster, I woud want to just hide, my emotions were uncontrollable. I thought I had the early signs of menopause but all mt OBGYN stuff was checked and I was good.

I sure do hope this is the answer for you. I can say it took me awhile and many times I questioned that it was the complete answer. Because docs were so sure before that it was my parathyroid I have asked them every couple months to retest my calium and the gland itself and there is no indication to doubt the diagnosis. Slowly everything went away, even my heart palpitations that I had for years. I am on a good amount of vits that have helped me alot, espcially with my neuro issues and I am still eating a low acidic diet trying to regain my bone loss.

It's hard to believe that wheat could cause so much damage to the body. For me, it was like getting low doses of arsenic poisoning, my body was slowly being eaten away.

Please keep us informed on your progress!!

Oh my! I can't tell you how grateful I am for this post...As far as I know my calcium levels are still on the high end but HEART PALPITATIONS??!! I have had them for years as well and would be so happy if they decreased or went away!!

I'm also in that questioning phase..."Am I doing the right thing?". I go to the grocery store and all of the bakery items scream at me, "buy me...buy me!!" Funny thing...they didn't do that so much before I went gluten-free... And so I wonder, am I giving up these things for nothing? The more I read, the more convinced I am that this is the right thing for me...

gluten-free 18 days and counting...

[AVR1962]

Oh my! I can't tell you how grateful I am for this post...As far as I know my calcium levels are still on the high end but HEART PALPITATIONS??!! I have had them for years as well and would be so happy if they decreased or went away!!

I'm also in that questioning phase..."Am I doing the right thing?". I go to the grocery store and all of the bakery items scream at me, "buy me...buy me!!" Funny thing...they didn't do that so much before I went gluten-free... And so I wonder, am I giving up these things for nothing? The more I read, the more convinced I am that this is the right thing for me...

gluten-free 18 days and counting...

Have docs mentioned anything to you about possible hypercalcemia or parathyroidism? Need to get Marilyn in on this too. She also had high calcium, had the surgery. I belonged to an online support groups for people wih parathyroid disease, the symptoms are so so similiar to that of celiac. Not all were getting better after 1, 2, 3 glands were removed. I opted to go off glutens before I was scheduled for surgery and that's when my calcium dropped. I sent Marilyn a link on the connection to celiac and the parathyroid. I'll see if I can find that info for you.