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

Wondering If I Might Have celiac disease?

iamblessed

Recommended Posts

iamblessed Newbie
iamblessed
Posted

Hi ya'll! It's passed through my head here & there over the years that I might have celiac disease. I took my grandmother for her colonscope a couple of weeks ago and the dr mentioned doing a celiac disease test on her. Said he didn't think she had it, but just in case. She has chronic stomach problems (diarahea) mostly (we asume) due to having part of her intestines taken out in her 30's. My dad just had to be taken to the emergency room for a allergic reaction to wheat three nights ago. He is deathly allegic to a certain type of wheat, tea, red meat, etc. (I know food allergies are different from this) He also has stomach problems w/ upper GI pain and is lactose intollerant. My grandmother's daughter and granddaughter..my aunt and cousin) both have have been diagnosed with IBS. I always thought they were just big complainers, because honestly...they are! LOL

Now to me. I've been having more of this upper stomach pain. It's hard to describe. It just hurts..bad..like a constant pressure & uncomfortableness. I had two Eggo waffles this morning and spent hours with this pain. Nothing I take seems to help. Other times I've tried one Librax and that didn't help. My dad takes 2 Libraxes at a time to help his and sometimes it takes 2 days for this pain to feel better. I had this pain triggered in June when I was prescribed a high dosage of antiobiotics. I was in such pain I was crying talking to the dr. He had me taking Librax & it did finally help that time. I was dx w/ hypothyroidism in 1994 as well as polycystic ovarian syndrome. My hubby and I have tried for 8 years to get pregnant to no avail. I also have this bad rash on my bottom, just above the crack on just one side. I can't seem to get rid of it and it itches like crazy sometimes. I try to leave it alone, but sometimes it looks like something got busted. It gets better on & off, but never goes away. I put off eating lunch because usually about 15 minutes later my energy level just crashes for a couple of hours. Nw like this afternoon I finally ate an apple, some celery, some cheddar cheese, and some nuts and I felt fine...no pain..no tiredness. Before this time the last thing that sent my stomach pain off was I made a loaf of bread (using all purpose flour and yeast) and ate a little of it for four days in a row w/ homemade veggie soup and I hurt so bad for days afterwards. Oh, the last thing. Since my early 20's (I'm now 38), I've been getting this awful, awful arm pain. It's not muscle. I tell my hubby it feels like my bone is aching! It's all the way from my neck/shoulder area to the tips of fingers. One side only at a time. Nothing helps. Constant. Sometimes likes for a couple of days. Makes me want to throw up. I also have migraines and chronic sinusitis. Boy do I sound like a miserable person. I'm not! I'm very positive and optomistic!

I just told my husband I think I should get tested for this. I do medical transcription & it's a joke that transcriptionists "get" every medical condition they type about, but I haven't typed about this..I promise! I'm just not sure if I'm headed in a direction I should even be looking in or certainlly that I want to be headed in! Thanks!

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

Celiac.com Sponsor (A8-M):


ksymonds84 Enthusiast
ksymonds84
Posted

Hello and Welcome! I would get the celiac panel done right away, especially since your still eating gluten. Many people (myself included) start the diet before testing which will most likely cause the tests to be false. Then the only way to get properly tested again is to do the challenge which was horrible for me. Your rash could be Dermatitis herpetiformis (HD) which is celiac related and responds to a gluten free diet. Now would be the time to biopsy it while it is still active. A Dermatologist is who you need to call for this. The sample is taken near the site not through it. Good luck and keep us all posted!

iamblessed Newbie
iamblessed
Posted
  • Author

Thanks for the welcome! We have a big problem w/ seeing dermatolgoist's where I live. There is only two groups, one isn't covered by our ins. and the other doesn't take new patient's! Crazy!

I admit I'm afraid of going ahead and getting tested and this being true. We're headed on a big family reunion vacation to Australia in June and I couldn't imagine the dificulty in trying to eat gluten free there. When we visited before we had a hard enough time finding "normal" food that we liked to eat. (We're pretty picky already..not into seafood much). I did see where this diet is kind of like the low carbohydrate diet, which is the diet I should be on for my PCOS anyway. Thanks for your welcome and I see I have a lot of check into about all of this.

Jean'sBrainonGluten Newbie
Jean'sBrainonGluten
Posted

Australia actually has a large celiac population so the restaurants and so on might be less challenging than you think, and there are several books and websites that discuss how to travel and stay gluten free.

If you have celiac you will feel better and have more energy and focus if you get off gluten. Try to get tested...

If you have $329 you can try myceliacid which does a gene test but they can only tell you the possibility of getting celiac, not whether you are actually reacting.

The migraine and arm pain could mean celiac antibodies are affecting your brain ( do web searches on celiac white matter and celiac cross reactivity to brain structures). I've had the migraines and that was the case for me. From what I've read the damage is reversible but you don't really want to mess with this.

Really try to get tested because that will help you be firm about planning for and eating gluten free.

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. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    2. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    4. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    5. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
×
×
  • 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.