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

Doctor Believes I Have Celiac Disease

sgm405

Recommended Posts

sgm405 Rookie
sgm405
Posted

Hello everyone. This is my first post here, so I figured I'd share my story.

For the longest time, I've had stomach problems. Dating back to high school, I've always had to use the restroom many times throughout the day, and always soon-after eating meals. For years I just dealt with it, before my then-girlfriend-now-wife pushed me to go see a doctor. They diagnosed me with IBS and tried several medications for it. Some seemed to help a bit, but the problem still existed. I chalked it up to having a weak stomach.

About two months ago, I began experiencing neuropathy in my feet, ankles, and calf muscles. This lasted for about two weeks, then turned to more of a tight/sore feeling in my feet and ankles. Since then, this has been off and on. Some days I feel OK, other days they feel very sore. My mother has MS, so that was (and still is a bit) my main fear.

My doctor sent me to a neurologist. They ran me through a series of tests (walking on my toes, sensitivity, etc) and everything seemed normal. My doctor said he believed that I might have Celiac Disease and scheduled me for an appointment to see a Gastrointestinal Specialist in a few weeks. My blood work came back almost normal - everything was good except a positive ANA test. They are sending me for "Athena" genetic testing this Monday.

That's where I'm at now. My main symptoms are a regular upset stomachs and sore feet/ankles (on and off).

I just wanted to introduce myself to you all and see what your thoughts were as far as his hypothesis that I have Celiac.

Thanks!

Steve

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

Celiac.com Sponsor (A8-M):


ciamarie Rookie
ciamarie
Posted

Hi Steve, and welcome to the forum! I hope you get some answers soon.

Since you didn't mention it, I also wanted to make sure the Dr. didn't tell you to start on a gluten-free diet yet? Sometimes they do, but that may have an effect on test results. On the bloodwork, did that include any celiac tests? You should probably get the results for your own records if you can, and feel free to post them here so others who are familiar with such things can give you input; if you want to that is.

sgm405 Rookie
sgm405
Posted
  • Author

Hi Steve, and welcome to the forum! I hope you get some answers soon.

Since you didn't mention it, I also wanted to make sure the Dr. didn't tell you to start on a gluten-free diet yet? Sometimes they do, but that may have an effect on test results. On the bloodwork, did that include any celiac tests? You should probably get the results for your own records if you can, and feel free to post them here so others who are familiar with such things can give you input; if you want to that is.

I started to go gluten-free for a few days (and started feeling better), but my wife read online that it could mess up the testing so I resumed my normal eating habits (and started feeling symptoms again).

I'm not sure what they tested for exactly, but I will ask for the full results the next time I go in. They just called and told me I had a positive ANA result, wanted to do further testing, and still wanted me to go to the GI doctor.

It's funny...I've dealt with stomach issues since high school but always chalked it up to having a weak stomach. I don't know why, but I never considered the possibility that it could be something more.

Thank you for your welcome, I appreciate it.

Skylark Collaborator
Skylark
Posted

Welcome from me as well. Gluten intolerance/celiac can cause all the symptoms you are describing. The tests are only maybe 75% sensitive, the other 25% of celiacs don't have positive blood tests. With all the GI history I'd push for a celiac biopsy before I accepted a diagnosis of MS. The ANA does show you have some autoimmunity going and autoimmune diseases tend to cluster.

Once celiac testing is done, give the gluten-free diet a good strict try for 4-6 months to make sure you're not non-celiac gluten intolerant. You have nothing to lose and a lot to gain. I thought I had a weak stomach and IBS too. Turns out it was all from gluten.

Also, has your neurologist tested you for B12 deficiency using a good test like homocysteine? It's well worth considering taking some B-complex including B12. There is also a form of thiamine called benfotiamine that a lot of people find helpful for neuropathy. The inflammation from gluten intolerance/celiac can cause a lot of trouble absorbing vitamins and the resulting deficiency can cause neuropathy.

frieze Community Regular
frieze
Posted

and your mom needs to be tested!

Raven815 Rookie
Raven815
Posted

Hi SGM,

I'm also fairly new here and I'm still learning, but I thought I'd throw my two cents in (for what it's worth). First of all, my Mother was diagnosed celic about 30 years ago so I am somewhat familiar with how the disease works. The interesting thing with me is, in 1991 I was diagnosed w/ MS. I had double vision for about 7 months. After that went away, I have never had any more problems with it and it has been, what, 21 years. A few years back, I was in the hospital with stomach issues (they never figured what was wrong), and the neurologist saw me (same one who diagnosed MS), and he said he couldn't believe that I was diagnosed w/ it and wondered if I actually ever even had it. I also have many other autoimmune diseases such as diabetes and Hashimoto's. I've always had a bad stomach, but never put 2&2 together. Well, huge wake up call when I developed a terrible rash the beginning of March, did a little research, and figured I probably did have celiac (DH). So, you could have MS, but you probably do have celiac. I have been off of gluten for a month and my rash is tons better. I will not be going back on gluten for any more testing. I might look into genetic testing, but the biopsy I had shows positive IgA antibodies, and from what I understand that means celiac. Good enough for me.

Good luck to you and keep us posted,

Laura :D

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

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

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • 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

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • 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.
×
×
  • 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.