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Should I Continue Gluten Free? Doctors Can't Help Me, Maybe You Can!

Should I be gf?

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Should I be gf? Newbie
Should I be gf?
Posted

I have some general questions (please read on if you have the time, I really appreciate it!):

  • How long should I try a gluten free diet if I have NO GI symptoms, but do have undiagnosed neurological symptoms?
  • How long should it take for me to see some improvement?
  • If I re-introduce gluten should I notice an immediate (acute) reaction even if I only have neurological symptoms?

I have been suffering from a strange and debilitating set of neurological/vision symptoms for 2.5 years. The best way I can describe it is that I feel like I have a beer buzz (almost dizzy, almost lightheaded, very confused). The "beer buzz" feeling is always there, but is far more severe in supermarkets/grocery stores and when I have a headache. My ability to track moving objects is far diminished and I can't read if the text or I am moving. NO doctor has been able to help me. Maybe you can?

 

I decided to try a gluten free diet. I have been on it for 3 months and I haven't noticed any big changes. I have been strict with what I eat. I did not replace all my cookware (I kept using a Teflon pan and some plastic spatulas). I did not change out my toothpaste, lotions, soaps. The least strict foods I have had are Larabars, peanut and almond butters, and frozen veggies.

 

I have had some testing done:

  • Celiac panel antibodies were negative. However, IGA serum is low.
  • HLA-DQ2 an HLA-DQ8 genes are negative.

I am hypothyroid. I have frequent urination, no libido (and testicular atrophy), fatigue, and some vitiligo.

 

I want to feel better. But, I don't want to waste time on my diet when I could be researching other possibilities. Thank you so much for you input. I will pursue any suggestions and answer any questions!

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pricklypear1971 Community Regular
pricklypear1971
Posted

Do you have Hashimoto's disease?

What thyroid meds are you on?

Have your hormones been tested? If so, which ones?

Have they run any other autoimmune disease tests?

Have you had allergy testing?

Have you tried antihistamines?

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

How long should I try a gluten free diet if I have NO GI symptoms, but do have undiagnosed neurological symptoms?

From what I have observed, it is usually the GI symptoms and headaches which improve the soonest.  Some symptoms can really linger. I have some cognitive issues (memory is poor, I lose words) which still has not improved after one year gluten-free. Most people recover pretty well in between 6-12 months but some are almost immediately whereas others take years.

 

How long should it take for me to see some improvement?

It really varies. It could be at any time now.

 

If I re-introduce gluten should I notice an immediate (acute) reaction even if I only have neurological symptoms?

Not necessarily. Some have an immediate reaction, for others it just creeps up on you.

 

Are you sure your hypothyroidism is being adequately treated?  That can really affect things too.

 

I would take your list of symptoms to your doctor and have a bunch of tests run like DHEA, alderstone, testosterone and a thyroid check (FT3, FT4, TSH). That's just my thoughts though.

 

I hope you feel better soon.

1desperateladysaved Proficient
1desperateladysaved
Posted

In my gluten days, I had difficulties with fatigue and fogginess.  It took me about 4 days of gluten free before I felt accidental glutenings.  I felt these as dizzy fogginess worse than usual.  Well, it could have been glutenings, or withdrawal.  My body reacts even more forcefully now when I eat some glutened accidentally.  For the first time, after 7 months gluten free, I got GI symptoms after a glutening.   I am over a year gluten free now and my mind has cleared.  I have done many treatments to get better, and I believe it is working. 

 

 

 

I agree with all the possible tests above to help you define and solve your problems.  The final test is always to go gluten free and see how it goes.  I heard 3-6 months as a start.  It sounds like you are already having a positive reaction to this test.  A positive reaction could be feeling better or worse.  I always say that any reaction, is a good reaction when trying a natural remedy.

 

Now,  I hope you will one day be encouraging another through their early gluten problems one fine day in the future.  I am hoping you will feel better soon.

 

D

Should I be gf? Newbie
Should I be gf?
Posted
  • Author

 

Do you have Hashimoto's disease?

What thyroid meds are you on?

Have your hormones been tested? If so, which ones?

Have they run any other autoimmune disease tests?

Have you had allergy testing?

Have you tried antihistamines?

Thanks pricklypeaer1971! To answer your questions:

Do you have Hashimoto's disease? I have Hashimoto's. Thyroid Peroxidase Ab 2965 U/mL (normal < 60) and Thyroglobulin Ab 148 U/mL (normal < 4).

What thyroid meds are you on? Synthroid 100 mcg 1X and Cytomel 5 mcg 2X daily.

Have your hormones been tested? If so, which ones? Testosterone, DHEA, Estradoil, LH, FSH, and Prolactin all in normal range (several in lower third of normal and I am 33).

Have they run any other autoimmune disease tests? Yes. No Lupus. GAD Ab are high 20 IU/mL (normal 0-5). MaTa testing was negative.

Have you had allergy testing? I have not had any allergy testing recently. I had the back prick test 10 years ago with no allergies.

Have you tried antihistamines? I tried antihistamines for about one week. Should I go longer?

 

I really appreciate any more questions/suggestions!

Should I be gf? Newbie
Should I be gf?
Posted
  • Author

Welcome to the board.  :)

 

How long should I try a gluten free diet if I have NO GI symptoms, but do have undiagnosed neurological symptoms?

From what I have observed, it is usually the GI symptoms and headaches which improve the soonest.  Some symptoms can really linger. I have some cognitive issues (memory is poor, I lose words) which still has not improved after one year gluten-free. Most people recover pretty well in between 6-12 months but some are almost immediately whereas others take years.

 

How long should it take for me to see some improvement?

It really varies. It could be at any time now.

 

If I re-introduce gluten should I notice an immediate (acute) reaction even if I only have neurological symptoms?

Not necessarily. Some have an immediate reaction, for others it just creeps up on you.

 

Are you sure your hypothyroidism is being adequately treated?  That can really affect things too.

 

I would take your list of symptoms to your doctor and have a bunch of tests run like DHEA, alderstone, testosterone and a thyroid check (FT3, FT4, TSH). That's just my thoughts though.

 

I hope you feel better soon.

Thanks nvsmom! I am working on better treating the hypothyroidism. My new endocrinologist discovered I haven't been converting T4 (Synthroid) to T3 very efficiently so he added Cytomel. All the sex hormones were at least within the normal range.

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