Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Could This Be Celiac?


Cher18

Recommended Posts

Cher18 Newbie

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.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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.

Link to comment
Share on other sites
IrishHeart Veteran

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.

Link to comment
Share on other sites
eatmeat4good Enthusiast

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.

Link to comment
Share on other sites
nora-n Rookie

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

Link to comment
Share on other sites
GFinDC Veteran

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.

Link to comment
Share on other sites
frieze Community Regular

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.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



TeknoLen Rookie

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...

Link to comment
Share on other sites
Cher18 Newbie

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

Link to comment
Share on other sites
eatmeat4good Enthusiast

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.

Link to comment
Share on other sites
Cher18 Newbie

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 !

Link to comment
Share on other sites
cyberprof Enthusiast

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.

Link to comment
Share on other sites
Cher18 Newbie

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

Link to comment
Share on other sites
ravenwoodglass Mentor

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.

Link to comment
Share on other sites
Cher18 Newbie

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?

Link to comment
Share on other sites
spacemama Newbie

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

Tamara

Link to comment
Share on other sites
Cher18 Newbie

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.

Link to comment
Share on other sites
nora-n Rookie

"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.

Link to comment
Share on other sites
  • 2 weeks later...
Cher18 Newbie

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.

Link to comment
Share on other sites
ravenwoodglass Mentor

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.

Link to comment
Share on other sites
BrittLoves2Run Apprentice

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!

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...