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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    2. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    3. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
    4. BlessedinBoston
      - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      @Jmartes71, I understand your frustration and anger. I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone. My doctors did not recognize nutritional deficiencies. Doctors are trained in medical learning institutions that are funded by pharmaceutical companies...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,412
    • Most Online (within 30 mins)
      7,748
    Susan Marble
    Newest Member
    Susan Marble
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.