Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Whal Else Could Be Wrong?

Demby Flex

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.