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Whal Else Could Be Wrong?

Demby Flex

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Demby Flex Newbie
Demby Flex
Posted

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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AlysonAnn Newbie
AlysonAnn
Posted

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

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

AlysonAnn Newbie
AlysonAnn
Posted

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

Glee06 Newbie
Glee06
Posted

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.

mushroom Proficient
mushroom
Posted

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.

cassP Contributor
cassP
Posted

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

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Demby Flex Newbie
Demby Flex
Posted
  • Author

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

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

dilettantesteph Collaborator
dilettantesteph
Posted

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.

GFinDC Veteran
GFinDC
Posted

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.

Skylark Collaborator
Skylark
Posted

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.

Open Original Shared Link

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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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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