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Demby Flex

Whal Else Could Be Wrong?

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Hello, I'm a newbie to this forum. I have been gluten free for over a year but am still coping with a lot of daily muscle pain/tension(from my toes to my neck - mostly on the left side), headaches, off balance feeling, cracking joints,crackling noises in my ear, fatigue, fuzzy vision etc. - just a general feeling of being not well. I've been very very careful about avoiding gluten and my entire house is gluten free (and I rarely eat out)so I don't think that accidental glutening or cross contamination is an issue.

I have been tested for everything under the sun from rheumatoid arthritis to sjorgen's syndrome to lyme disease and can't figure out what else could be going on. The doctor's told me that I possibly could have tmj, but I have been wearing a splint for five months with little relief. I did have a low Vitamin D level back in April (not deficient just lower than the normal range), and have been taking extra vitamin D (1,000 UD) since.

Is it possible that my Vitamin D levels could be still low and causing these symptoms or could I have developed some sort of food intolerance? Something else?

I appreciate any ideas, thanks!

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Hi, I am in the same exact situation. I've been gluten free for only a month. I continued feeling bad, and now almost worse after giving up gluten. I am having shivers, fatigue, brain fog, fuzzy vision, constipation and a lot of hair loss.

The symptoms seem to arise only after eating things. Never in the morning. I would like to hear other people's opinions and experiences with what could be happening to us. I can't get through the day feeling like this. I just want to curl up with a blanket and stare at the wall. This is not good!

I feel your pain.

-Alyson

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What are you guys eating? You should be going with whole unprocessed foods as much as you can. It is also not unusual for us to have other intolerances. The most common are soy and dairy. Also make sure you are doing all you need to in your home to prevent cross contamination. It can take a while to heal but after a year you should be well on your way. Make sure you have checked all drugs, OTC and script for gluten with the maker. Also check all supplements and be sure to read the whole label as barley and wheat grass can be in the item but it is still allowed to have a gluten-free label. CC can even come from nonfood sources like makeup, shampoos, pet foods, remodeling materials, the workplace if you work around flour or use it when cooking for others and art and craft supplies.

I hope your feeling better soon. Read as much as you can here and ask any questions you need to.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi ravenwoodglass, thanks for your advice. I have been reading around a lot and I gave up dairy, soy, all medications and supplements. As I had said I am eating only whole veggies and fruits, rice, gluten free pasta, and olive oil. I have been pretty minimal for a while now with no positive change. I am going to look into salicylate, amines and glutamate intolerance and sensitivities. I don't know what else to do.

-Alyson

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Sorry to hear your still having problems. It does take time to heal. I have noticed I have begun to have problems with corn and rice-they each have their own gluten as well. :( Check out the book Specific Carbohydrate Diet or SCD and also look into the health benefits of Braggs Apple Cider Vinegar. I hope you feel better soon.

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I did have a low Vitamin D level back in April (not deficient just lower than the normal range), and have been taking extra vitamin D (1,000 UD) since.

Is it possible that my Vitamin D levels could be still low and causing these symptoms or could I have developed some sort of food intolerance? Something else?

I appreciate any ideas, thanks!

If your D is low, 1000 IU is not going to get it back in range any time soon. Your D needs to be mid-range for you to feel good. The way my doc explained it to me, if you take that small a dose it is like having an empty gas tank and putting in one gallon to get you to the next gas station -- you are always running on empty. You need to fill up the tank first (I took 50,000 IU once a week for two months, and presently take it every month. I have just seen a nutritionist who prefers that I take 3000 IU every day (and my levels are good now) so you can see that your 1000 IU is not going to get you very far :o I would ask your doc to give you some prescription D3 to bring your range up to mid-level and then take 3,000. But that's just my experience and opinion.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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AlysonAnn: i dont know anything about u- but do u think u might need meat and fish in your diet?? some people feel best as a vegan, but others like me would be absolutely sick without meat. **also- have u gotten your thyroid checked?? sometimes thyroid problems can cause hair loss

idk?? hope you first 2 posters are getting everything checked with your doctor... i dont know how long you were Celiac or gluten intolerant before your diagnosis... some people have a lot of complications from years of nondiagnosis. ??? a friend of my mom's wasnt diagnosed till she was in her 50s... by then she had some Osteoporosis.. and had strange symptoms like Paget's Disease- of course it took like 25 years for someone to dx her with Celiac <_<

good luck with everything... hope you 2 feel better soon


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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Thank you all for your responses. I will go back to the doctor to have my Vitamin D levels re-checked and having the vitamin level increased. Have any of you had magnesium supplements resolve muscle pain? My magnesium levels are fine, but I've heard that the blood test is not necessarily accurate.

I will also check into the Cider Vinegar and Specific Carbohydrate Diet, as well as soy possibly causing an issue. I don't seem to eat much soy in my food, but I do eat a lot of soy lectin - can this still cause issues?

Thanks again,

Katherine

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Hi ravenwoodglass, thanks for your advice. I have been reading around a lot and I gave up dairy, soy, all medications and supplements. As I had said I am eating only whole veggies and fruits, rice, gluten free pasta, and olive oil. I have been pretty minimal for a while now with no positive change. I am going to look into salicylate, amines and glutamate intolerance and sensitivities. I don't know what else to do.

-Alyson

You are doing the right things. You have only been gluten free for a month and it can take some time to heal. We can also have withdrawls from gluten so you may have a bit of that going on also. I don't see any protein in your diet, what are you eating for protein? If you are a vegetarian beans and nut butters added to your rice would be a good idea. If not make sure you are eating some meat, chicken or fish.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Have you seen this?

Naturally gluten free grains can be contaminated. Are you eating any processed grains? Like pasta? It could be contaminated too. I buy my grains whole, sort, wash, dry and grind myself. I am very sensitive to low levels of gluten.

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You are doing the right things. You have only been gluten free for a month and it can take some time to heal. We can also have withdrawals from gluten so you may have a bit of that going on also. I don't see any protein in your diet, what are you eating for protein? If you are a vegetarian beans and nut butters added to your rice would be a good idea. If not make sure you are eating some meat, chicken or fish.

Agree agree agree. Try some meat or add some avocadoes I'd say ditch the gluten-free pasta for a while and stick with rice or quinoa. Are you eating nightshades? Tomatoes, potatoes, peppers, eggplant? They can cause problems for some people.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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Hi, I am in the same exact situation. I've been gluten free for only a month. I continued feeling bad, and now almost worse after giving up gluten. I am having shivers, fatigue, brain fog, fuzzy vision, constipation and a lot of hair loss.

I just learned about this recently. Some people get an opiate-like effect from gluten.

http://www.plantpoisonsandrottenstuff.info/content/elimination-diet/gluten-casein.aspx

You might be going through something like narcotic withdrawals. The shivers and fatigue certainly fit. I don't know how long it will last if that's what is happening to you. I didn't have to go through anything like that myself.

There's a TON of other info on that website, so if the opiate idea doesn't feel right you might find something else helpful. I hope you feel better soon.

DembyFlex, you might look at the FAILSAFE diet on that site. It's supposed to be really good. I'm thinking of trying it myself.

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