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

Should I Get Diagnosed?

TeganGF

Recommended Posts

TeganGF Newbie
TeganGF
Posted

Hello everyone,

I need some advice, as I do not know anyone with celiac...

I have always had what I thought was a sensitive stomach. I never knew what would trigger it, but I knew one thing was dairy. When I was about 11, I had a flu shot and I had a reaction for almost a year. I would get hives all over my body and get swollen. I had an allergy test done and they said I was allergic to dairy, eggs, and wheat. My parents said I had always been able to eat those things and they took me to a new doctor who put me on an allergy med to stop the reaction. Since then, I am now 27, I have always gotten swollen hands and random hives on my body and face.

When I was 20, I was hospitalized for 3 days for a stomach infection (more specifically my cecum) and they said they didn't know what caused it. Then about 6 months ago, I had bad pains and started throwing up. I went to the hospital and they said I had ovarian cysts and colitis. THey gave me medicine for it and I followed up with my OBGYN. Then about 2 weeks later after I finished the medicine, my stomach got swollen again and I was having shooting pains. I was sent to a GI doc. By this point, I had basically stopped eating because I felt so bad. I lost 15 pounds in 4 weeks. From my past he suspected Chrohns. I had an endoscopy and colonoscopy. I was told I had inflammation of my small intestine and a small hiatal hernia. They also took a biopsy of my small intestine to test for celiac.

I did not hear about my results for 2 more weeks because my doc when on vacation. I had still not been eating anything. When he came back, he said the results came back inconclusive and he would do a blood test. Another 2 weeks passed before that and I still hadn't been eating much of anything. My test results came back fine. He said I had IBS and wanted to put me on a medication that I take 4 times a day and causes weight gain. I said I would prefer to fix it with diet and he said it wouldn't help. I refused and left.

I went gluten free and the shooting pains stopped. I was still swollen though and I also cut out dairy. SInce I have done this, I feel great. I also have not had any hives or swollen hands. My ovarian cysts I was getting monthly and have subsided (although I was put on new birth control pills). After reading more about celiac and some of the related symptons that I have had (teeth enamel problems, ovarian problems, lactose, arthritus, etc.), I feel I may have celiac.

I am already doing a gluten free diet, so I wasn't sure if it was important for me to get diagnosed? What do you think??? Please help!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You could be celiac but if you have been gluten free or gluten light that will cause a false negative. Seeing a remission of symptoms is fairly diagnostic in itself but it you want a doctors official diagnosis then you will need to go back to eating gluten at least for 3 months or so for testing.

If adding gluten back in causes the symptoms to reoccur then you do have your answer. While we don't need a doctors permission to be gluten free there are times when it can be helpful for some.

You may want to go back to your GI and tell him of your recovery on the diet. Ask him if he wants you to do a gluten challenge and then if symptoms return tell him right away and don't down play the symptoms if they are severe. There is a false negative rate of 20 to 30% with testing even on a full gluten diet. If your doctor is aware of this he may give you an offical diagnosis based on your reaction to adding gluten back in.

nora-n Rookie
nora-n
Posted

Some people who had gone gluten free order a private test with enterolab.com as their tests can pick up the antibodies for a long time after going gluten free.

But they cannot diagnose celiac per se.

Just gluten sensitivity,and casein and soy intolerance (which may be huge problems for some too)

Roda Rising Star
Roda
Posted

The swelling and hives definately could be related to your wheat allergy. You also could have celiac also. As far as the allergy you should avoid the wheat. You don't want to chance having a worse reaction. If you are celiac or gluten intolerent you need to avoid in addition to wheat, rye and barley also. Some people are sensitive to gluten free oats too.

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. 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...
    3. 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.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • 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?
×
×
  • 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.