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

Am I Intolerant To Something Else?!

lischro

By lischro
in Coping with Celiac Disease

Recommended Posts

lischro Apprentice
lischro
Posted

Hi guys,

You've been extremely helpful to me in the past and would just like to run through some things to see if anyone has some insight. I have been gluten free for about 3 months. I haven't really noticed anything getting better. My main issues are hypothyroidism, chronic constipation (the only thing that helps is 4x the regular dose of miralax), weight gain, extreeeeeemeeee bloating in my stomach... tired and achey all the time. My boyfriend complains that I just "never actually feel good." Well, that's true. oh, and I'm a 24 year old female.

Anyway, I've had great success being gluten free (no cheating and I live alone so I cook for myself) but now I'm more and more aware that something else seems to be going on. What I have now... especially bothersome during the past week is a strong, burning sensation in my right knee. It's mostly in my knee but I also feel it run down my shin a little ways. Still extremely bloated, achy and my hands and feet get tingly a lot.... it's true, I just never feel good.

Like many of you, I'm not diagnosed, I've seen doctors for the past 3 years and they can't/won't help...

I started to suspect caesin? but I don't know much about that.... Any ideas?

Thank you for reading!

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

Celiac.com Sponsor (A8-M):


txplowgirl Enthusiast
txplowgirl
Posted

Hi There, well to start off you could still be having withdrawals but then a gain it might be dairy, or soy. Just a suggestion, I would drop the dairy and possibly soy for a couple of weeks then add it back in. The tingling in your hands may be a vitamin B-12 deficiency. Anyway, just a thought.

dilettantesteph Collaborator
dilettantesteph
Posted

It could also be from cross contamination. Have you seen Tricia Thompsons study about the contamination of gluten free grains? You could try cutting out grains for awhile. I sort, wash and grind my own.

RiceGuy Collaborator
RiceGuy
Posted

Adding to the comments thus far, I'd suggest some nutritional supplements for the tingling and such. A magnesium supplement can be very helpful for the tingling, and may help the knee as well. A deficiency of magnesium is also common with Celiac, and can lead to C. Start with 200-400mg, and increase by about 200mg every 5 days until you either get relief, or your stools become too loose (in which case back the dosage down). I'd also recommend a sublingual methylcobalamin tablet for the B12, at least 1mg, but 5mg may be more helpful. A good strong co-enzyme B-complex can also be helpful.

A digestive enzyme supplement can be helpful for the bloating. Look for one derived entirely from microbes, as these can withstand the acidity of the stomach, and are generally gluten-free unless there is some additive. NOW Foods and Doctor's Best both make one of this type.

Everyone is different in how long it takes to respond to a gluten-free diet. It took about six months before I noticed anything other than the immediate dry throat I'd get from wheat.

Mari Enthusiast
Mari
Posted

You've gotten some good nutritional advice and hope it helps, but you may want to be tested for Lyme Disease which is common in Celiacs. If the bloating continues there are some good medical tests and treatments which cold help, some people have either a Metametrix enteric panel or a Diagnos Tech enteric and saliva panel to find out if you have organisms which need to be treated. These panels look for indications of harmful bacteria,, yeasts, parasites and some metabolic problems. I usually use alternative methods but as Drs learn to use the newer diagnostic tests and treatments people report that they are satisfied with the results. Bloating is caused by bacteria and yeasts feasting on the food you eat.

Mama Melissa Enthusiast
Mama Melissa
Posted

hey riceguy, im about 6 1/2 weeks into my diet and i do see some changes especially gi wise but i realise sometimes after i eat a meal i get such a dry throat and sometimes a cough and my chest will feel heavy soo weird i swear i eliminated all gluten soo frusterasting

rustycat Rookie
rustycat
Posted

Dairy causes those symptoms for me. It might be the casein in dairy, though I'm not sure. The sore knees usually last a couple of days. The C and the fatigue can last longer.

Best wishes and I hope you find the cause.

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

Celiac.com Sponsor (A8-M):


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. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @Charlie1946, Sorry I sidetracked your thread a bit. Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over. Have you been checked for SIBO? There's a significant link between length of Omeprazole use and SIBO. I had SIBO, thrush (Candida...
    2. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    3. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,098
    • Most Online (within 30 mins)
      7,748
    BothySmithy
    Newest Member
    BothySmithy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.