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An Update At 4 Months And Some Questions

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I tested negative for celiac disease several months ago. Not sure what my results were but there were two tests and one of the numbers was 5... My doctor thought I might be gluten intolerant so I've now been on a Gluten-free diet for 4+ months and have experienced some improvement. In particular, my bowels seem much better although they seemed a little better before going Gluten-free so I am not sure if I can attribute it to the diet or not. The confusion I have been experiencing is also somewhat improved but it varies a great deal from day to day. Two steps forward, one step back...

I have had two glutenings... The first time I had about a half a cookie and had a very severe episode of confusion/agitation that lasted much longer than usual. The next second time I took a vitamin that was not Gluten-free and didn't think that much about it but had some serious D (rare for me these days) after that with moderate confusion lasting longer than usual. So I am guessing that gluten may be a part of the picture but it's hard to say, as I have another condition (long story) that affects my nervous system. I've also changed a few other things that could be responsible for my improvement. Regardless I am staying on the diet for now...

A couple of questions:

1. I'd appreciate any support, encouragement, wisdom from any of you that have had significant neuro symptoms. What pattern of improvement should I expect with the neuro symptoms (if I am gluten intolerant)? My main concern is with episodes of confusion and coordination problems.

2. Does Celiac or gluten intolerance affect the muscles at all? I have a lot of problems with muscle rigidity, hyperexcitability, irritation. This has improved some.

3. This morning I was making my son a waffle and it fell apart and I had waffle crumbs on my hands. Later I experienced confusion earlier in the day than I usually do and again some D, which I don't really have that much these days. Is it possible that simply touching the waffle crumbs did this or this simply a coincidence?

Thanks very much,

-Mike

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ang1e0251 Contributor
ang1e0251
Posted

Sorry you feel like an in-between with your dx. It sounds like you are benifitting from eating gluten-free. When you have a reaction like you described, it seems to correlate to the gluten. If you post those test results here, there are those who can interpret them for you. I have heard of dr's who told patients they were a little intolerant or just slightly celiac. The way I understand it, that just can't be; you are or you're not. Can others verify this?

As far as neuro symptoms, I have found mine greatly improved on the gluten-free diet. After 1 year, the brain fog is definately gone and the clumsiness has improved drastically. I still have tremors but I describe them as half of the way they were last year. I've seen memory improvement too. These all return if I am glutened. I found the neuro symptoms slowly improved over the months, the fogginess went first.

Muscle pain, oh yeah. Even recently I had some real pain in my shoulder muscles. I finally realized I was eating too many alternate grains. This week all that pain is gone and I'm so grateful not to awakened with it in the night. I've decided to leave it for a bit then do a trial to see which particular flours get me. I hope I can tolerate some grains but if not, I'll accept that and go on.

Crumbs can get you. It can be as simple as touching your mouth without thinking before you've washed your hands. There are those who say they couldn't get well without their house going completely gluten-free. It's just my DH and I, so I haven't done that. That works for me but it doesn't work for eveyone. Figure out what works for you personally and go for it.

If you are confused about what foods are reactive to you, keep a food/symptom diary for awhile. Sounds simple but that can really help you and your dr narrow things down. I hope this has been helpful to you. Ask anything else you would like. There are many here with answers.

rinne Apprentice
rinne
Posted
I tested negative for celiac disease several months ago. Not sure what my results were but there were two tests and one of the numbers was 5... My doctor thought I might be gluten intolerant so I've now been on a Gluten-free diet for 4+ months and have experienced some improvement. In particular, my bowels seem much better although they seemed a little better before going Gluten-free so I am not sure if I can attribute it to the diet or not. The confusion I have been experiencing is also somewhat improved but it varies a great deal from day to day. Two steps forward, one step back...

I have had two glutenings... The first time I had about a half a cookie and had a very severe episode of confusion/agitation that lasted much longer than usual. The next second time I took a vitamin that was not Gluten-free and didn't think that much about it but had some serious D (rare for me these days) after that with moderate confusion lasting longer than usual. So I am guessing that gluten may be a part of the picture but it's hard to say, as I have another condition (long story) that affects my nervous system. I've also changed a few other things that could be responsible for my improvement. Regardless I am staying on the diet for now...

A couple of questions:

1. I'd appreciate any support, encouragement, wisdom from any of you that have had significant neuro symptoms. What pattern of improvement should I expect with the neuro symptoms (if I am gluten intolerant)? My main concern is with episodes of confusion and coordination problems.

2. Does Celiac or gluten intolerance affect the muscles at all? I have a lot of problems with muscle rigidity, hyperexcitability, irritation. This has improved some.

3. This morning I was making my son a waffle and it fell apart and I had waffle crumbs on my hands. Later I experienced confusion earlier in the day than I usually do and again some D, which I don't really have that much these days. Is it possible that simply touching the waffle crumbs did this or this simply a coincidence?

Thanks very much,

-Mike

1) I had a number of neuro symptoms that cleared up with Vitamin B shots, where are your B levels at? It is very common for Celiacs to be low in Vitamin B12 and D in particular although not only those. Has your doctor done blood work to check your vitamin and mineral levels?

2) I just read that this may also be related to B deficiencies.

3 If you only touched the waffle crumbs then I would think not but you may be that sensitive. I am very sensitive, three drops of a homeopathic solution with grain based alcohol has been enough to poison me but I have made sandwiches without any problem.

I think that the reality is that once we are seriously ill it just takes time and sometimes it is not the food itself it is how our digestion is working that day. I find it very helpful to eat no more than three or four ingredients at a time.

Are you keeping a journal to track your reactions?

You said you have another condition, if you would like to share you may find that others have also had that problem and it may be connected to the problems with gluten you are having. No pressure. :) Just to let you know there are a number of us with long stories. :)

Light Rookie
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Posted
  • Author

Hi, ang1e0251-

I don't have the results handy but I think it was the ttg that was 5... Can you describe what your neuro symptoms were like and how severe they were? Do you recall the pattern of your recovery? When you first noticed you were getting better, etc... Were your tremors worse when you were having a foggy episode? I have had essential tremors since I was 11 but they are much worse (and different) during episodes. The clumsiness is also very prominent during episodes.

Thanks, very much. It is so helpful to hear from others who are further along.

-Mike

Light Rookie
Light
Posted
  • Author

Hi, rinne-

My B-12 was down to 191 but is now up to 1324 with subingual b-12 supplementation. I don't know if it's helped or not but I am thrilled to have this corrected and I suspect that it is helping on some level. My D was very low at 8. I started 1000 IU and my level only went up to 9. I've since increased my dose and will retest in 2 months. Is magnesium deficiency common? I've been noting, which foods precede episodes but haven't kept a daily journal. I should do that though.

The other condition.... I had severe and protracted withdrawal symptoms from discontinuing antidepressants. I am almost four years clean and I am still neurologically damaged. Not many people know about this issue but it is very serious. I know scores of people whose lives were destroyed by these medications. It was by leaps and bounds the worst mistake of my life. It wouldn't be dramatic to call my outcome tragic... I don't expect a full recovery but I believe that I will continue to improve.

Thanks very much,

Mike

rinne Apprentice
rinne
Posted

I am glad to hear that your B levels are up and that you are addressing the D deficiency too and yes to the magnesium although someone more scientific than I would be better to respond to it.

I'm sorry about the issues you have had to deal with, depression is linked to Celiac and so often that is missed, not that I am assuming it was in your case, and worse not only missed but medicated with something that does nothing for the Celiac.

I recall reading an article on one in particular and was horrified to learn that for some going off this drug was nearly an impossibility as the withdrawal was so severe. :(

I hope you will see positive changes on the gluten free diet. :)

sugarsue Enthusiast
sugarsue
Posted

Hi! I'm glad you have come here looking for answers and I hope you find what you need to help in your healing. I wanted to mention, that my co-workers daughter, newly diagnosed was getting gluten fingerprint rashes if she touched gluten and then touched her skin. So I do believe it is possible to react to gluten touching your skin if you are highly sensitive.

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ang1e0251 Contributor
ang1e0251
Posted

I don't have the results handy but I think it was the ttg that was 5... Can you describe what your neuro symptoms were like and how severe they were? Do you recall the pattern of your recovery? When you first noticed you were getting better, etc... Were your tremors worse when you were having a foggy episode? I have had essential tremors since I was 11 but they are much worse (and different) during episodes. The clumsiness is also very prominent during episodes.

I've had a tremor in my hand since I was young but it only shook when I gripped something and rested my forearm a certain way. Now my hands are shaky and I was starting to have tremors in my mouth; my tongue and starting in my jaw. Also I have had tingling and burning in my toes for some years.

The hands are probably half of the tremor they were a year ago. I noticed a big inprovement the first month. The rest just came along gradually, so slow I didn't really notice until one day I saw that I could do more than before. But when I'm glutened, the brain fog and heavy tremors set in again until the reaction is over.

My feet just seemed to improve slowly over time. I don't have those sensations any more, no more infected ingrown toenail and the one nail that was misshapen is almost back to normal. I had a bad glutening at the end of the summer and it all came back and took about 3 months to heal.

I had the flu and couldn't stomach all the coffee that week. I noticed since I was drinking half the coffee, the mouth tremors were reduced. I completely cut out the coffee and no more of those. I feel like they want to start but then the sensation kind of short circuits. If I have an adrenaline rush they start up slightly.

I hope this helps you. I have hope when I think about how far I've come.

ravenwoodglass Mentor
ravenwoodglass
Posted

It can take awhile for the nerves to heal. I saw a decrease in brain fog, depression and anxiety pretty quickly but a lot of the other neuro stuff took about 6 months to see a difference. I have gluten ataxia and even though that is much better and I can now walk pretty much unaided it is still there after 6 years. That I have found out is not unusual with ataxa. I did regain reflexes in my legs by the end of two years gluten free but I had stopped dragging my right leg, the most severely effected, by the end of six months. The numbness and tingling I had in my hands, arms and feet resolved within the 6 month period also. A sublingual B12, as mentioned, will help those nerves heal as fast as they can.

Light Rookie
Light
Posted
  • Author

Thanks, everyone for all of the help. I am going to keep at the diet and see where it takes me. Time to start a food journal.. Between the glutenings that are bound to happen and the improvement that I might see over time I think it will become clearer whether I am gluten intolerant or not... That's my hope anyway....

one more mile Contributor
one more mile
Posted

I just noticed I can throw things much better with better aim then before. I do not have as sever problems as you do but my always firm muscles have started to loosen up a little, after a few months of being gluten free I also could read my own notes and shopping lists. My family has noticed my that my mind is much more clearer and I am more there.

For years I though that I had week ankles. but now that my balance is improving I no longer trip. How sweet it is!

It seems that I overcompensated for years or excused things that are now healing. Some fast, some take longer.

I hope you get results like I have been getting.

One more mile.

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