Light

Thanks for your thoughts, ravenwoodglass. I understand that neuro recovery is non-linear and may take several months I just couldn't understand why I had such palpable improvement early on that was so short-lived. As I said before there were other changes that could have accounted for this positive shift and that's what got me wondering if celiac is really an issue. I believe that I was reasonably strict with the diet. It was very restricted and I used my own pans, etc... The D is puzzling though I have to admit. What is CC?

I tested negative for celiac disease but went Gluten-free as an experiment to see if it might help my neurological symptoms. I did have considerable improvement in the first several weeks but I also made other changes around this time that may have been responsible this. After this brief period of improvement I slipped back to the status quo and even got a little worse. At 8 months I was doubtful that I had gluten intolerance and did several gluten challenges. These didn't seem to have any affect on my neurological symptoms but I did experience D in excess of what I had even before I went Gluten-free. Is it possible that my body needs to relearn how to digest gluten??

Can you guys help me figure out if my corn tortillas are safe?

They contain--corn treated with lime, calcium propronate, carboxymethyl cellulose, monocalcium phosphate, potassium sorbate, fumaric acid).

Thanks very much,

Mike

I would double check all of your foods. I thought I was gluten-free but noticed some days I felt like crap even though I would be eating almost the exact same thing everyday. It turned out to be a cross contamination issue with Lay's potato chips. So double check your foods and make sure they are not made on the same lines as other wheat/gluten containing products. Good luck

Gfresh--

Can you tell me about the cross contamination issue? I've had a terrible setback for several weeks and have been eating a lot of lays low salt chips.

Thanks,

Mike

Thanks, guys. I am looking Gluten-free, 500mcg, subingual of cobalamine, which looks as though it may be a tall order.

Is your brand sublingual? I forgot to mention that I am looking for a sublingual form. My current brand is TwinLab.

I was wondering if someone could recommend a gluten-free B-12 supplement? Also, are the following ingredients in my current B-12 supplement Gluten-free?

Malic Acid

Cherry flavor

Cellulose

Sorbitol

Croscarmellose sodium

Magnesium stearate

Silica

Thanks very much,

Mike

Thanks everyone for your thoughtful replies. The only thing new I've added to my diet recently has been homemade lentil soup. Seems pretty safe to me but I'll be calling the company to see what they have to say...

I have an email in to my doctor about the genetic testing for celiac and doing more general tests to look for other causes of my confusion.

I have to say it again. My sinuses are phenomenal. It's hard to believe. I've had allergies my whole life and I don't know that my nose has ever been this clear.

Thanks again for your insight form the trenches...

-Mike

To recap--my celiac disease test results were negative... My PCP thought the Gluten-free diet might be worth trying anyway... Several weeks after going Gluten-free my worst symptom (confusion) improved by maybe 50-75%. The improvement was palpable and I was certain I was on my way to recovery. Despite religiously adhering to the diet. for the past 6 weeks I've felt like I am almost back to square one. I do have the occasional good day, or days when the onset of the confusion is much later in the day--but I also have horrendous days in which the confusion/agitation is there almost the entire day.

1. Should I be doing better at five months? Is it normal to have setbacks spanning weeks this far out?

2. I just saw a new neurologist and based on my symptoms she thinks that I have celiac disease even though my results were negative. I am not willing to do the biopsy... Should I ask for genetic testing?

3. Finally, I've noticed that my nasal congestion is vastly improved--maybe the best it's ever been... Could this be a result of going Gluten-free?

Thanks in advance for your encouragement and insights,

Mike

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....

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

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

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

Thanks everyone for your thoughtful responses. I have other medical issues and there are other possible explanations for my brain fog, etc but I also have reason to believe that this could be related to gluten. It's helpful to hear everyones' time lines and it helps to motivate me to keep going. I am excited to give some of the products suggested here a try. One day at at time...

Thanks,

-Mike

My tTg was 5 but because of the significant percentage of false negatives discussed here and my doctors suggestion, I am giving the diet a go. A few questions....

I know it varies a great deal and that full recovery can take a year or longer but at what point do people notice that the diet is definitely helping? I am interested in hearing what sort of range you see here in the forums as well as your own personal experience. My symptoms are primarily neuro--brain fog episodes, general cognitive problems, etc. I was thinking of trying the diet for three months and continuing if I experience any positive results. Does that seem like a reasonable plan?

Can we talk about bread for minute? I tried a corn based bread. Bad, bad, bad. The bagels I tried, which were composed of a melange of wheat substitutes tasted like gas station/vending machine fare. The rice bread wasn't bad but the slices are tiny and it falls apart so easily.

Thanks,

-Mike

Thanks for all of the great information, everyone. I may have additional questions and comments but am pretty foggy at the moment. Just looked at the link above and I had forgotten that I love potato bread so that may be an option. I've got to have carb alternatives:)

I just got my results. I didn't write down the name of the test but it was one of the antibody tests and my result was 5. Based on this value, any guess as to which test this was? Any from the trenches, comments on this test, it's validity, etc? Should I see if the proof is in the pudding and go for the diet or ask for additional blood tests?

Thanks,

-Mike

Thank you all for the input! Based on this information I think I may continue with the diet regardless of my test results (should have those tomorrow). Today was day 1... I had some horrible corn based bread but got through it. Looks like it's back to the store to look for other gluten free bread products...

Does non-alcoholic beer have gluten in it? I got hit hard with the brain fog right after having part of an NA beer.

Thanks, guys!!

-Mike

Thanks for the information and welcome, Liaa. I will take a look around. I should have my results on Monday. My Dr. said that some people show improvements on gluten-free diets even if they don't test positive. I think I'll avoid the endoscopy, as I have issues with anesthesia.

Thanks, Amyleigh...

How's your son doing now?

Thanks for the link to the article, Momma Goose. That's interesting... I just started reading the site. Is there a subset of members here who don't have prominent GI symptoms?

Also, can I change my diet after doing my Celiac screen or are there possibly more tests? It's really hard for me to keep eating wheat, etc knowing that it may be contributing to my problems.

Thanks,

Mike

Hi,

I have loose stools but just once a day. I don't have bloating or other GI symptoms... However, I have other symptoms that I wanted to run by you guys. (I am waiting for the results of my celiac disease screen)

--Terrible brain fog.

--Nutritional deficiencies (Vitamin D, Vitamin B12, borderline low thiamin) that may be indicative of malabsorption.

--Symptom onset/exacerbation often after meals.

--Lack of coordination during episodes ("Gluten Ataxia"?)

--Considerable fatigue

-- Hyperparathyroid (a year ago anyway...)

--Chronic headaches

--Cracking joints (don't know if this is a celiac disease symptom but I noticed others posting about this and I thought I'd mention it.

What do you think, could I have Celiac without major GI symptoms?

Thanks,

Mike