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

Could This Be Celiac?

Cher18

Recommended Posts

Cher18 Newbie
Cher18
Posted

I'm 45, and have had serious acne for about 10 years, unable to be treated by antibiotics. I now have problems with tingling (mainly arms,legs and feet), pins and needles and muscle spasms which is being put down to problem with disks in neck. Over the past 6 months, I have developed what I can only describe as severe boils, mainly on thighs and arms. I also have bloating and sometimes look as though I am pregnant ! I have been tested for MS, Rhumatoid Athritis and numerous other conditions but doctors won't test for Celiac as I don't have major stomach problems. My nephew has been diagnosed. Grateful for any thoughts or advice, thanks.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It could be celiac. If your doctors absolutely refuse to test for celiac then you do have the option of doing at least 3 months on the diet to see if it helps.

IrishHeart Veteran
IrishHeart
Posted

Could be... and many people do not have gastro symptoms, but dermatological, neurological, musculoskeletal symptoms instead.

Did you tell your doctor that your nephew is a Dxed Celiac?

That may persuade him.

eatmeat4good Enthusiast
eatmeat4good
Posted

I had severe acne all my life. Accutane twice, antibiotics constantly for 25 years...and still had severe acne. THEN I developed the true DH rash. The skin form of Celiac. Stinging, hurting, burning, itching, weeping, lesions. It took 7 years to figure out it was DH. And guess what? When I went gluten free, the acne disappeared. It is worth a try. I also had migraines and muscle weakness and bone pain. Neurological brain fog, couldn't think, depressed and anxious. Guess what? All that disappeared too. If your Dr. doesn't think they are related...it doesn't mean they aren't. I had 25 Dr.'s try to treat me and all I got was Adult Acne, Neurotic Excoriation, and Fibromyalgia as diagnoses. Celiac.com saved my life. It is Celiac. And guess what the Dr. said when I presented all the symptoms consistent with Celiac and drew the line to the diagnosis and told him I felt better off of gluten. He said, "yeah, I bet that is what it is." Whatever. Diagnose yourself if the Dr.'s won't...it isn't illegal and it will make you feel better if gluten is causing all of your symptoms.

Iodine also contributes to the problem if what you really have is a variation of DH form of Celiac. For that you have to limit iodine to stop the skin from reacting. To do that you follow the Thyca.com diet until your skin heals....then you can add in iodine again. There is also a form of acne that is caused by iodine and is unresponsive to antibiotics. If this is what you have, the thyca.com diet will help you. Try gluten free and low iodine and you should know something within a month I would say.

nora-n Rookie
nora-n
Posted

Could also be hidradenitis suppurativa, just use the search on the forum. It is definitely gluten related.

GFinDC Veteran
GFinDC
Posted

If your doctor won't test go a new doctor who will. Ask first if they are willing to do the test. If there is a celiac support group in your area you can check with them for a doctor recommendation. CSA is one group but there are others. Also check the doctors section of the board.

frieze Community Regular
frieze
Posted

I sm thinking the nephew would be a 2' degree relative, not 1'. The parent that is your sib should be tested (actually both parents) if positive would bring more wt. to bear in trying to get tested...If you feel like a little confrontation, ask the doc to deny you in writing.

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

Celiac.com Sponsor (A8-M):


TeknoLen Rookie
TeknoLen
Posted

I had the pins and needles you mention (my feet and ankles) and also the muscle twitches (left bicep) during my first couple weeks of the GFCFSF diet. I chalked it up to (among several) withdrawal symtoms. Lately, I have not noticed either. Three-month trial diet suggested above seems like a good idea, as does pressing your doctor to run the test. Full-blown Celiac however is not required to benefit from gluten-free diet, I am only gluten-sensitive and I feel better almost every subsequent gluten-free day...

Cher18 Newbie
Cher18
Posted
  • Author

Thank you all for taking the time to reply. It's very frustrating and worrying when the professionals start raising illnesses such as MS. On reading through some of the posts on this site, its reassuring to hear others experiences. When I had my MRI,showing the problems with disks in my neck, it also showed up UBOs on the brain. Luckily, the neurologist was fantastic and went to great lengths to explain the difference between these and MS Lesions, however, did not mention celiac. It seems celiac is not always at the forefront of doctor's minds but it's interesting to read the posts on these here. I will definitely either get tested or go gluten free and see how I feel. It is worth purchasing the Bio-card test? Has anyone used this..may be easier than persuading my doctor ! Thanks again

eatmeat4good Enthusiast
eatmeat4good
Posted

If you do go gluten free...please post back how you are doing. It is inspiring for other's and even for us old-timers. I'm hopeful for you.

Cher18 Newbie
Cher18
Posted
  • Author

Thank you, I have a doctors appointment on Monday...I have printed some info off and plan on taking it with me, in case I need it to support the case for a blood test. Will let you know how things go. I'm not sure how hopeful to be since I have just found out that he is of the optinion my nephew may grow out of caeliac !

cyberprof Enthusiast
cyberprof
Posted

Thank you, I have a doctors appointment on Monday...I have printed some info off and plan on taking it with me, in case I need it to support the case for a blood test. Will let you know how things go. I'm not sure how hopeful to be since I have just found out that he is of the optinion my nephew may grow out of caeliac !

Cher18, did you know that UBOs ARE symptoms of celiac? Ravenwoodglass and other posters here had them before diagnosis. Maybe someone has a link to a scholarly article that you could show to your doctor.

Cher18 Newbie
Cher18
Posted
  • Author

Cyberprof, I read about that on this site, which was made me wonder even more. If someone could provide that link, that would be fantastic. What a great site this is...and great people, thank you

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you all for taking the time to reply. It's very frustrating and worrying when the professionals start raising illnesses such as MS. On reading through some of the posts on this site, its reassuring to hear others experiences. When I had my MRI,showing the problems with disks in my neck, it also showed up UBOs on the brain. Luckily, the neurologist was fantastic and went to great lengths to explain the difference between these and MS Lesions, however, did not mention celiac. It seems celiac is not always at the forefront of doctor's minds but it's interesting to read the posts on these here. I will definitely either get tested or go gluten free and see how I feel. It is worth purchasing the Bio-card test? Has anyone used this..may be easier than persuading my doctor ! Thanks again

Do go gluten free after all celiac related testing is done. My neuro was also clueless about UBO's and it cost me years of progressively worse neuro symptoms. I will try and find some of the research on UBO's and post a link. They are considered diagnostic of celiac antibodies that have attacked the brain.

It is possible to recover, although some may have some permanent damage. I could barely walk, had trouble with memory and speech and even trouble with swallowing by the time I was diagnosed. Most of my issues fortunately did resolve but I am left with some minor permanent damage because of the very long length of time from first symptoms in childhood to diagnosis in my forties.

Cher18 Newbie
Cher18
Posted
  • Author

Thank you. I suspect I may have a fight on my hands to get tested, that was why I was considering the home test kit, but I'm not sure if this is any good?

spacemama Newbie
spacemama
Posted

it maybe krohns, my cousin has it and she gets the boils you mentioned. It is auto-immune for sure.

Tamara

Cher18 Newbie
Cher18
Posted
  • Author

Thank you for all your help. I had a doctors appointment today and went in armed with all the info I might need to convince him to test. I didn't need it...he listened to my thoughts and blood tests are getting done tomorrow! Will keep you posted of the outcome. Thanks again.

nora-n Rookie
nora-n
Posted

"the boils" could go away on a strict gluten free diet, since hidradenitis suppurativa does go away on a gluten-free diet and it might be HS. Lots of people do not have any diagnosis for their HS.

  • 2 weeks later...
Cher18 Newbie
Cher18
Posted
  • Author

I had my resuls of my test back and they have came back negative for celiac and the other tests that were ran. It is a relief to know one way or the other and at least it's now ruled out. Many thanks for all your help.

ravenwoodglass Mentor
ravenwoodglass
Posted

I had my resuls of my test back and they have came back negative for celiac and the other tests that were ran. It is a relief to know one way or the other and at least it's now ruled out. Many thanks for all your help.

Now is when you give the diet a good strict try for a while. Don't assume that because the tests were negative that you don't have celiac. There are many reasons why false negatives occur in blood or biopsy. Doctors going by my negative blood work cost me many years and almost my life. Give the diet a try you have nothing to lose but your pain.

BrittLoves2Run Apprentice
BrittLoves2Run
Posted

I had a doctor appointment today and asked to be tested for Celiac. My doctor was very wierd about it stating "That's very unlikely" and "everyone comes in here now thinking they have it. Plus you'd have to have all the symptoms" I said "I DO have all the symptoms" and mentioned that i've had IBS for years.. he changed after that and sent me for the blood work. I really had to push it. Best of Luck!

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • 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.