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Balance And Falling

Songbird1976

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Songbird1976 Rookie
Songbird1976
Posted

Hi Everyone....

Was wondering if anyone knew about this issue since I have been reading that many people with celiac disease seem to have this issue in common. I have been teased (lovingly) thank goodness for many years by my girls about being clumsy and tripping, falling, etc. One daughter even asked once if it was genetic and at the time I found it to be hilarious! :blink:

After yesterday, falling off a bicycle (again) and riding a bike has been a passion since I was young. I used to ride 25 miles a day for quite some time. This fall was really a disappointment because it's one of several over a couple of years that's made me realize it's not stopping. Not going away this tendency... and must be part of this whole celiac disease picture... I just hadn't put all the pieces together until now. :huh:

... SO, my question is, now that I'm gluten-free only since March, and healing and doing much better, do I dare hope that my balance issues will go away???? Does anyone have experience with this???? I also have balance issues just standing and sometimes with just doing regular things. Walking I'm fine just seems to be if I'm trying to do something and it involves using one foot or leaning. Of course, the bike riding seems ok for a bit while straight on a path but any deviation I'm over like a trike on "Rowan and Martin's Laugh In" (Ugh) :lol: My depth perception isn't so hot either and doesn't help the situation but isn't the main issue. Input and advice is greatly appreciated!!! Thank you! :D

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RiceGuy Collaborator
RiceGuy
Posted

The first thing which comes to mind is nutritional deficiencies. I'd focus on vitamin B12, B vitamins in general, vitamin D, and vitamin E. Some minerals may also play a role. While you may improve without supplementation on a gluten-free diet, my suggestion would be to get a methylcobalamin (B12) sublingual tablet - 5mg, and take one daily. Also a co-enzyme B-complex, vitamin D3, and vitamin E. A multivitamin/mineral at the same time may also be a good idea.

Some foods can impair balance, such as nightshades. So you may find it beneficial to avoid those too. If you use cooking oils such as canola, make certain it is 100% expeller pressed. Most canola is extracted with hexane, which is highly toxic. And although manufacturers claim they remove the hexane, I wouldn't doubt a person's sensitivities.

HTH

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Jestgar Rising Star
Jestgar
Posted

It took about a year for me to stop compulsively gripping the handrail whenever I went down stairs. I took that as a sign that my body was back to feeling in control of balance.

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Songbird1976 Rookie
Songbird1976
  • Author
Posted

The first thing which comes to mind is nutritional deficiencies. I'd focus on vitamin B12, B vitamins in general, vitamin D, and vitamin E. Some minerals may also play a role. While you may improve without supplementation on a gluten-free diet, my suggestion would be to get a methylcobalamin (B12) sublingual tablet - 5mg, and take one daily. Also a co-enzyme B-complex, vitamin D3, and vitamin E. A multivitamin/mineral at the same time may also be a good idea.

Some foods can impair balance, such as nightshades. So you may find it beneficial to avoid those too. If you use cooking oils such as canola, make certain it is 100% expeller pressed. Most canola is extracted with hexane, which is highly toxic. And although manufacturers claim they remove the hexane, I wouldn't doubt a person's sensitivities.

HTH

Thank you RiceGuy... I have started on B12 so far and D3 (am looking for supplements I am not sensitive to) and will add these to the list. Very much appreciate your suggestions. I only use olive oil at this point... I had no idea that these issues could stem from nutritional deficiencies. I have a lot to learn it seems. Glad to have this information. :)

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IrishHeart Veteran
IrishHeart
Posted

Another Klutz right here. :huh:

I had similar problems, walking "sideways" as if drunk sometimes, (that was scary). I was always tripping on stairs or curbs and banging into walls as I negotiated a corner. I broke a few toes and I had bruises everywhere! My whole life, I had bruises somewhere! I was a dancer, and my knees and legs looked like a train wreck. By the time the "gluten head" was in full gear, my depth perception was bad and I had to stop driving because my reflexes were shot.

Various neurological symptoms made my life hell, yet an MRI of my brain showed...nothing in there! (go ahead and laugh, I said that on purpose).

What was not so funny was I felt as if I were walking in a dream, feeling so spaced out that I did not know how I got from point A to point B. I had to pull off the road once and call my husband because I felt so out of it and was not sure why. (that big wheat bread sandwich I had at lunch was probably involved)

I told him--and any doctor who I saw--I feel "peculiar--and that something is wrong!"

No one knew why.

Burning nerves, horrid parasthesia--which was body-wide--and even 9 months after being gluten-free, my hands, arms, trunk, legs and feet were still burning and tingling.

I burned like mad for 3+ years.

I stood up one day last September, my foot dragged and did not work properly because it was numb, and I went down. I heard Crack, crack, crack :blink: luckily, I had "only" sprained all the ligaments in my ankle. It took months --and some PT rehab--for it to heal. :blink: ..there's more, but you get the idea.

The good news is, :) almost all of those issues have resolved, but I do still find myself misjudging things and getting a bruise here and there. I still have some burning and some tingling, but not as bad as it was! Not at all. I am gluten-free for 16 months now.

..and No more falling on the stairs(hmm, should not have jinxed myself by proclaiming that so soon....). I do still hang onto the handrails and I find escalators pretty daunting.

Hubs gets nervous when I have a knife in my hand while preparing dinner...I have a lot of nice scars. :huh: but mostly, I am not lost in "gluten head" anymore.

You may have to give it more time, Gail. It may be a question for a neurologist if you do not improve. (I saw 3 of them.) I had EMGs done too--nothing "abnormal".

Hang tough, hon.

You may be interested in this article.

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Songbird1976 Rookie
Songbird1976
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Posted

IrishHeart... I can't thank you enough for your entire reply. I cried, I laughed. I'm so grateful. Was like re-living my life through your experience almost. Thank you so much for sharing, and caring. This has meant so much to me. Know that I am smiling with all my heart! :D

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IrishHeart Veteran
IrishHeart
Posted

G,

Everyone has different experiences and healing times, as we have discussed via our PM chats, but I want you to know that many of us had these issues and they resolve. :)

It's hard to believe they will go away, but they do.

Some people have continuing problems--as that article explains--and you may wish to consult a neurologist if they persist.

You want to rule out any neurological impairment or lesions.

See how it goes.

Take care!

My best, IH

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ravenwoodglass Mentor
ravenwoodglass
Posted

Doctors thought I had MS for a while. I had gotten to the point where I needed Canadian Canes or a wall to be able to walk and when I fell I had a lot of trouble getting back up. About 6 months after diagnosis I caught myself running up the stairs without even thinking about it. I sat at the top and cryed.

I still had some balance issues for a while after that but by the 2 year point I had regained reflexes in my legs and could actually dance again.

Do be patient as it takes time for the nerves to heal. Some will heal more fully than others. I found I had to be VERY strict as the least CC would send me back to careening off of walls again for a couple weeks at least.

I am going on 10 years gluten-free now. I do still have a small amount of residual damage to my right side and figure that will always be with me but for the most part I have fully healed. I just have to watch my typing because my left hand moves faster than my right and have gotten used to my 'crooked' smile.

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USF1970 Apprentice
USF1970
Posted

I haven't had time to read all of the replies posted but wanted to add my experience. I fell three times in one year - once b/c my shoes were too big (I think), and another b/c I missed the curb but the third was a doozy. I was taking a walk on NYE (certainly alcohol wasn't involved), I had good shoes on, it was daylight and not for a minute did i feel dizzy but the next thing I knew, I was kissing the concrete and broke my elbow. I fell HARD. I had an MRI to make sure there was nothing going on and of course, saw a neurologist. Nothing could be determined but exactly a year after my fall, an endoscope revealed that I am somehow getting gluten = my villa is blunted and/or flattened (can they be both?). It's been over a year since I fell but I am now afraid to walk alone - afraid to walk period. I exercise only in the gym on a treadmill that I can hang onto. However, I have had no signs of dizziness or any of the other symptoms described. Just my experience......

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IrishHeart Veteran
IrishHeart
Posted

Before DX, I was "encouraged to exercise" by doctors, PTs and chiropractors who felt that "being out shape" was part of my problem. :blink: so I dutifully walked (dragged myself) on a treadmill at the gym 3X a week for 3 months. I would have to stop because I was dizzy --or because I had to use the bathroom AGAIN, ---but I held on for dear life on that thing. My head swam with tinnitis and what I call gluten buzz. My legs and back hurt and I could barely breathe without difficulty, but because I had "nothing wrong with me", I tried valiantly to get well by following their advice. Had to stop finally when I told hubs I could not feel my feet and the parasthesia and burning in my spine was getting worse. I did not even sweat in the dry sauna. :blink: Everyone was dripping wet, but my skin was only bright red and burning...that's it. Everything was malfunctioning.

The truth is, when you are malnourished, you simply cannot do what other people do.

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Songbird1976 Rookie
Songbird1976
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Posted

Doctors thought I had MS for a while. I had gotten to the point where I needed Canadian Canes or a wall to be able to walk and when I fell I had a lot of trouble getting back up. About 6 months after diagnosis I caught myself running up the stairs without even thinking about it. I sat at the top and cryed.

I still had some balance issues for a while after that but by the 2 year point I had regained reflexes in my legs and could actually dance again.

Do be patient as it takes time for the nerves to heal. Some will heal more fully than others. I found I had to be VERY strict as the least CC would send me back to careening off of walls again for a couple weeks at least.

I am going on 10 years gluten-free now. I do still have a small amount of residual damage to my right side and figure that will always be with me but for the most part I have fully healed. I just have to watch my typing because my left hand moves faster than my right and have gotten used to my 'crooked' smile.

Thank you so much for sharing such a heartwarming story Ravenwoodglass. So much you have been through and such triumph too!! :) I can only imagine your excitement at running up those stairs and it gives me such hope... Much appreciated!! :D From one grateful crooked smile to another!

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Songbird1976 Rookie
Songbird1976
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Posted

Before DX, I was "encouraged to exercise" by doctors, PTs and chiropractors who felt that "being out shape" was part of my problem. :blink: so I dutifully walked (dragged myself) on a treadmill at the gym 3X a week for 3 months. I would have to stop because I was dizzy --or because I had to use the bathroom AGAIN, ---but I held on for dear life on that thing. My head swam with tinnitis and what I call gluten buzz. My legs and back hurt and I could barely breathe without difficulty, but because I had "nothing wrong with me", I tried valiantly to get well by following their advice. Had to stop finally when I told hubs I could not feel my feet and the parasthesia and burning in my spine was getting worse. I did not even sweat in the dry sauna. :blink: Everyone was dripping wet, but my skin was only bright red and burning...that's it. Everything was malfunctioning.

The truth is, when you are malnourished, you simply cannot do what other people do.

IH it is totally amazing to me what you have experienced and endured. Means so much to me to be able to read and share your experience. Thank you very much for sharing. You are truly helping me before I do some very similar things and it's more than appreciated. I would have gone out and been a crazy person on my bicycle, falling only knows how many more times and possibly causing injuries. Now I know to walk and swim and WAIT :blink: and be patient and heal. Then take it one day at a time. That kind of insight is so invaluable. The peace of mind it brings, a true gift. My safety? well that is immeasurable. Thanks with all my Irish Heart :D I'm so thrilled you are doing so much better!!!

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Songbird1976 Rookie
Songbird1976
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Just a little note... I am fortunate in that because of my migraines having been so severe for so long that I was able to see a very prominent specialist and did have scans CT and MRI and many things were ruled out... and yes "IrishHeart" they found nothing up there too!!! :lol: I will look to some new doctors to shed some light just to cover all the bases as recommended. I sure do feel lucky to have found out so many answers to so many questions so far, thank you to everyone who has responded thus far. The difference it has made is amazing. :)

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ravenwoodglass Mentor
ravenwoodglass
Posted

Just a little note... I am fortunate in that because of my migraines having been so severe for so long that I was able to see a very prominent specialist and did have scans CT and MRI and many things were ruled out... and yes "IrishHeart" they found nothing up there too!!! :lol: I will look to some new doctors to shed some light just to cover all the bases as recommended. I sure do feel lucky to have found out so many answers to so many questions so far, thank you to everyone who has responded thus far. The difference it has made is amazing. :)

You might want to check and see if the MRI showed any UBOs, Unidentified Bright Objects). Some doctors think these are normal. My neuro did and it cost me a few years. The UBOs are diagnostic of celiac autoimmune action in the brain but many doctors don't know that.

You mentioned in another post not being dizzy. I thought I should mention that I never was dizzy either. I was just always off balance with that progressing over a long time. Something that helped me a lot as I was healing was seeing a physical therapist. He watched me walk and did a few other tests and I went 2 to 3 times a week for a while. Don't know if that would be helpful for you.

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IrishHeart Veteran
IrishHeart
Posted

Like Raven, I have been in PT and MT for over a year now, regaining lost muscle mass and strength. Oddly, despite being very stiff (my muscles felt like wood back then, my MT says) and burning and sore, I was flexible, so I pushed myself to do things I probably shouldn't have. It got so bad I could not lift my arms, open a jar or turn my neck. One rheumy told me I could have ankylosing spondyloarthropy and had me take methotrexate (which I promptly threw up) and I told him after trying it for 2 weeks, Look, I do not have the markers for that, I am not taking that drug just to "see if it helps"!I never went back to him, and of course, like all the specialists I saw, he was wrong. :angry:

My legs seemed useless. I worried I had MS, like my cousin and dear friend.

EMGs and MRIs were normal, but small fiber neuoropathy is found in 16% of celiacs (but is NOT seen on regular EMGs) and as Raven also points out, lesions and UBOs (which several members have posted about on here) that may well be on those MRIs are, inexplicably ignored? :blink:

Sometimes, I felt as if I were walking on one of those walking sidewalks, like in airports? I said to my sister at one point, I feel like someone is slowly poisoning me with a neurotoxin. Like I was living in a bad dream. How crazy is that? yet, pretty close to the truth!

Essentially, the whole thing was just surreal. If I had not met other celiacs with the same neuro symptoms, I would have thought myself bonkers. When I met a woman last month who confessed she had hallucinated while on gluten, I filled up with tears. I hadn't told anyone (except my hubs--and that was well after the fact) about that, for fear the doctor would not take me seriously.

This thing screwed with my brain so much and when I think back on it, I am filled with dread that it would ever happen again. This is why I am so relentless (read that as a "pain in the arse" :lol: ) in making sure others are informed about the toxicity of gluten.

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IrishHeart Veteran
IrishHeart
Posted

I would have gone out and been a crazy person on my bicycle, falling only knows how many more times and possibly causing injuries. Now I know to walk and swim and WAIT :blink: and be patient and heal. Then take it one day at a time.

I know we talked about this on PMs, but hon---TIME is your ally.

Today and tomorrow are enough to focus on right now.

Take it slowly. Your body is "rebooting" itself. :) No one hates the thought of being patient more than I do. I lost so much time being sick and incapacitated and now, I just want go, go, go! and DO things, but my body is not entirely well, so I have to take it one day at a time. My vacation last month was a victory for me, but I spent 2 weeks recovering from it. :)

Ravenwoodglass, Gemini, and others who are 7 years or more gluten-free-- these are the people who will tell you it gets better each year and to just try and be patient. Your body will respond.

They are so right! ;)

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Songbird1976 Rookie
Songbird1976
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Posted

I know we talked about this on PMs, but hon---TIME is your ally.

Today and tomorrow are enough to focus on right now.

Take it slowly. Your body is "rebooting" itself. :) No one hates the thought of being patient more than I do. I lost so much time being sick and incapacitated and now, I just want go, go, go! and DO things, but my body is not entirely well, so I have to take it one day at a time. My vacation last month was a victory for me, but I spent 2 weeks recovering from it. :)

Ravenwoodglass, Gemini, and others who are 7 years or more gluten-free-- these are the people who will tell you it gets better each year and to just try and be patient. Your body will respond.

They are so right! ;)

Oh I couldn't agree with you more. I was so good to myself this weekend. Instead of pushing it I went on one motorcycle ride (I was on the back) and no more bike riding but will swim and spa tomorrow. I like that idea of our body "rebooting" itself. I took to day and decided not to go on the 2nd lengthy motorcycle ride and just went for a nice car ride, then a walk and had a nice afternoon and enjoyed some garden veggies and time with a friend. I'm feeling very very lucky today. Your support is really great and helping me tremendously. Thank you IrishHeart!

I look forward to hearing from everyone of course! Such amazing people here it's very humbling and very heartwarming! :)

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JoeBlow Newbie
JoeBlow
Posted

Oh I couldn't agree with you more. I was so good to myself this weekend. Instead of pushing it I went on one motorcycle ride (I was on the back) and no more bike riding but will swim and spa tomorrow. I like that idea of our body "rebooting" itself. I took to day and decided not to go on the 2nd lengthy motorcycle ride and just went for a nice car ride, then a walk and had a nice afternoon and enjoyed some garden veggies and time with a friend. I'm feeling very very lucky today. Your support is really great and helping me tremendously. Thank you IrishHeart!

I look forward to hearing from everyone of course! Such amazing people here it's very humbling and very heartwarming! :)

The falling down is probably gluten ataxia. It goes along with peripheral neuropathy. 24% of celiacs make antibodies to their neurons. This means your central and peripheral nervous systems. Purkinje cells in your cerebellum are needed for balance and coordination, and can get killed by your immune system. There is information on the web that these cells do not regenerate. However, my doctor says they can regenerate. I am in a small online support group called "Celiac Brains", started by a woman who got on Social Security Disability. She had the dragging leg problem, and needs a wheelchair sometimes. Celiacs whose immune systems attack their brains are especially sensitive to gluten. I myself get the neuro symptoms even when I breathe too much where I can smell gluten. The woman who is disabled goes along with her husband and kids to eat in restaurants, and gets CC, and then is disabled for long periods. Her doctors do not know if she will get better this time. Pleased be careful! I really recommend that you never eat in restaurants unless they are totally gluten-free. Joking about nothing being in there on a brain scan is no joke. People with this problem have their brains shrink. If you want more information, I can provide links, or you can search for "gluten ataxia" or "Dr. Marios Hadjivassiliou". See the article at

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pricklypear1971 Community Regular
pricklypear1971
Posted

I can't say anything new, but yes....I was a klutz that would walk into door frames. And the door frames weren't moving.

I noticed when I got glutened in Dec the clumsiness came back quickly. Especially in my fingers.

Vitams help me alot. I was low on d3, iron, b's. Still on supplaments.

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Songbird1976 Rookie
Songbird1976
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Posted

I can't say anything new, but yes....I was a klutz that would walk into door frames. And the door frames weren't moving.

I noticed when I got glutened in Dec the clumsiness came back quickly. Especially in my fingers.

Vitams help me alot. I was low on d3, iron, b's. Still on supplaments.

Thanks PricklyPear... wow me too with the door frames. :unsure: Thanks for sharing and for letting me know it came back fast when glutened. I sure don't plan on that happening but I'm sure none of us does either. Hope you are feeling better now. :)

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Songbird1976 Rookie
Songbird1976
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Posted

The falling down is probably gluten ataxia. It goes along with peripheral neuropathy. 24% of celiacs make antibodies to their neurons. This means your central and peripheral nervous systems. Purkinje cells in your cerebellum are needed for balance and coordination, and can get killed by your immune system. There is information on the web that these cells do not regenerate. However, my doctor says they can regenerate. I am in a small online support group called "Celiac Brains", started by a woman who got on Social Security Disability. She had the dragging leg problem, and needs a wheelchair sometimes. Celiacs whose immune systems attack their brains are especially sensitive to gluten. I myself get the neuro symptoms even when I breathe too much where I can smell gluten. The woman who is disabled goes along with her husband and kids to eat in restaurants, and gets CC, and then is disabled for long periods. Her doctors do not know if she will get better this time. Pleased be careful! I really recommend that you never eat in restaurants unless they are totally gluten-free. Joking about nothing being in there on a brain scan is no joke. People with this problem have their brains shrink. If you want more information, I can provide links, or you can search for "gluten ataxia" or "Dr. Marios Hadjivassiliou". See the article at

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Thank you for sharing this article very much. I sure have a lot to think about and a lot to take in. :)

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Songbird1976 Rookie
Songbird1976
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Posted

I haven't had time to read all of the replies posted but wanted to add my experience. I fell three times in one year - once b/c my shoes were too big (I think), and another b/c I missed the curb but the third was a doozy. I was taking a walk on NYE (certainly alcohol wasn't involved), I had good shoes on, it was daylight and not for a minute did i feel dizzy but the next thing I knew, I was kissing the concrete and broke my elbow. I fell HARD. I had an MRI to make sure there was nothing going on and of course, saw a neurologist. Nothing could be determined but exactly a year after my fall, an endoscope revealed that I am somehow getting gluten = my villa is blunted and/or flattened (can they be both?). It's been over a year since I fell but I am now afraid to walk alone - afraid to walk period. I exercise only in the gym on a treadmill that I can hang onto. However, I have had no signs of dizziness or any of the other symptoms described. Just my experience......

Very much appreciate you adding your experience USF1970. Have you found the source of your glutening?

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IrishHeart Veteran
IrishHeart
Posted

I really recommend that you never eat in restaurants unless they are totally gluten-free. Joking about nothing being in there on a brain scan is no joke. People with this problem have their brains shrink. If you want more information, I can provide links, or you can search for "gluten ataxia" or "Dr. Marios Hadjivassiliou". See the article at

Open Original Shared Link

No one is joking about other people's brains, or making light of ataxia, I assure you. We had it ourselves and recovered for the most part and we are trying to be encouraging, that's all.

Of course, NONE of what happened to us is funny. That's not what we meant at all.

I have provided the OP with all of these links to gluten ataxia on PM conversations, including this one. But it is very good of you to post it again!

There are many to be found here as well

Open Original Shared Link

Most notably, "Early diagnosis and treatment with a gluten free diet can improve ataxia and prevent its progression"

The OP has been to a neurologist.

Finding a totally gluten free restaurant--an entire restaurant that has never had ANY gluten products in it?-- is impossible, except for one. As far as I know, it's Sherry Lynn's in Latham, NY.

Are there others? Please let us know!!! :) We are grateful for any information!

Best wishes, IH

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JoeBlow Newbie
JoeBlow
Posted

Finding a totally gluten free restaurant--an entire restaurant that has never had ANY gluten products in it?-- is impossible, except for one. As far as I know, it's Sherry Lynn's in Latham, NY.

Are there others? Please let us know!!! :) We are grateful for any information!

Best wishes, IH

IrishHeart,

Thanks for the links, organization is not my forte.

As for totally gluten free restaurants, the ones I have been to probably don't compare to Sherry Lynn's.

In the Chicago area, there are:

Rose's Wheatfree Bakery and Cafe Open Original Shared Link

OMG It's Gluten Free Bakery and Cafe Open Original Shared Link

In the future, there will be Senza: Open Original Shared Link being established by the widow of the owner of Fatoush, which was sold.

Apparently the Great Taste Cafe closed, as have several other dedicated gluten-free restaurants around the country. Dedicated gluten-free Bakeries do better, such as Sweet Ali's www.sweetalis.com.

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JoeBlow Newbie
JoeBlow
Posted

OK, more dedicated gluten-free restaurants, which I have not been to,

in Colorado there is Coquettes Bistro and Bakery:

Open Original Shared Link

in Massachusetts there is Idgy's:

Open Original Shared Link

Get out and support these places, or they will be gone, like the others.

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    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      14 year old with Celiac & EOE still suffering...

      By Nacina · Posted

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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