John Libonati

Were You Diagnosed with Gluten Sensitivity or Celiac Disease by a Doctor or Did You Figure It Out on Your Own?

by John Libonati on December 9th, 2011


John Libonati Gluten Free Works

do doctors understand gluten sensitivity or celiac diseaseIt is well documented that only a small minority of those with celiac disease are successfully diagnosed in a medical setting.

Gluten sensitivity, which we based on medical research and proposed in Recognizing Celiac Disease in 2007,  has only recently been accepted as a true medical condition. So we decided to hold an informal survey to see just how people are becoming gluten-free? How are they finding out that gluten sensitivity or celiac disease are the cause of their health problems and are doctors diagnosing them or are they figuring it out on their own?

We posted this question to our GlutenFreeWorks Facebook friends and here are their answers. Were YOU diagnosed by a doctor? Leave your comments below!

    •  

      Amber Schroeder My chiropractor diagnosed me with gluten intolerance. 

      Wednesday at 9:27am ·  ·  1
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      Debra J. Gowlland Diagnosed with celiac disease only after I asked to be tested….Dr. told me it was very rare. 

      Wednesday at 9:27am ·  ·  1
    •  

      Kelly Stephens Wylam Took over 8 years with declining health and too many symptoms to mention..numerous Dr. visits and nutritionist (which were NO help)….but…I diagnosed myself! 

      Wednesday at 9:28am ·  ·  1
    •  

      Pascha Hansen A naturepath told me to stop eating gluten. 

      Wednesday at 9:30am ·  ·  1
    •  

      Jessica Douga Was sick for yrs. they wld run tests of their own that wld be negative. Vomiting every time I ate for two weeks was the last straw .I diagnosed myself. When I asked for test doc looked at me like I was a nutter. 

      Wednesday at 9:31am ·  ·  1
    •  

      Tom Bolander My Dermatologist diagnosed me….. 

      Wednesday at 9:34am ·  ·  1
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      David Larson I tried it because the tests were all negative, the meds were only working about half the time and I figured that it was worth a try. I was off the meds within 2 weeks of going gluten-free. I guess I diagnosed myself! 

      Wednesday at 9:34am ·  ·  1
    •  

      Shari Regan Self-diagnosed….doctor said it was very rare 

      Wednesday at 9:35am ·  ·  1
    •  

      Carla Marshall A naturopath diagnosed me … thought I had a sugar problem because within an hour or less of eating gluten my energy would be drained and I’d be ready to go to sleep. 

      Wednesday at 9:36am ·  ·  2
    •  

      Renae Maslonkowski The doctors I saw were useless. I had a negative blood test for celiac so they said I was fine (and a GI specialist said diet didn’t matter in regards to my symptoms). So I saw a nutritionist, she pulled gluten out and in 2 weeks I felt better than I had in years. 

      Wednesday at 9:45am ·  ·  1
    •  

      Kitty Harrison After decades of visits to my primary care doctor, a gastroenterologist, dermatologist, and allergy specialist I finally went to a Naturopath in desperation and was diagnosed in one visit! 

      Wednesday at 9:46am ·  ·  3
    •  

      Karen Marie Cox Self-diagnosed. Doctors dont know anything anymore. 

      Wednesday at 9:47am ·  ·  1
    •  

      Shannon Marie self-diagnosed! 

      Wednesday at 9:49am ·  ·  1
    •  

      Laura Eadon Blood test… 

      Wednesday at 9:52am ·  ·  1
    •  

      René Burks Adkins My mom guessed it, but I didn’t mention it to my pcp. He later suggested I get the blood test and I was resistant. They were right. I’m very fortunate. 

      Wednesday at 10:03am ·  ·  1
    •  

      Michelle Forsman I was diagnosed by my primary care doc (at that time) who herself is celiac via labs and an endoscope. That was 7 1/2 years ago. My symptoms date back 32 years before that and no one could figure it out, or tried. My daughter was diagnosed by me and confirmed by removing gluten and later challenging. My uncle and my husband’s sister are also doctor diagnosed/confirmed celiacs so my daughter had celiac genetic influences from both sides of the family. When she began reacting to gluten, it was a no-brainer. 

      Wednesday at 10:12am ·  ·  2
    •  

      Candice Johnson-Hriech I was diagnosed with IBS in 10 years ago. Then this year I saw my doctor did some test and came back as low on calcium and that I was depressed. I never filled the prescription for anti-depressants but started taking a multivitamin. After a month or more my calcium was still low and I still felt terrible. Googled all of my symptoms and it everything I read pointed to celiac disease. I asked to be test and when it came back positive my doctor looked like she was scared to tell me, assuming probably that I would be upset. To the contrary I was finally excited to know what was wrong. Now I feel like a million dollars. My 3 kids are off gluten and have better behavior and no long have bowel problem even though they were tested and came back negative. 

      Wednesday at 10:22am ·  ·  1
    •  

      Shauna Stockton My lil one is autistic and decided on my own to change his diet 

      Wednesday at 10:28am ·  ·  1
    •  

      Yolanda Garcia My 5 year old was having severe behavioral issues and a constant runny nose. In speaking to a Psycologist about his short history she asked 1 question do I (mom) have allergies to which I answered yes. And she presented the theory of gluten / casein intolerance. One week GFCF and my son said “mommy my brain is no longer on fire.” God interviened n sent us on the right path to find the answers thank God. 

      Wednesday at 10:31am ·  ·  4
    •  

      Le Garden Bakery After my weight fell from 122 to 92 pounds, my heart’s resting pulse was 122 and plagued with migraine headaches, i began to search for the problem & found it was celiac disease. Doctors missed it and said i had a wasting disease and i would surly die. Well, I’m still here, 12 years later, 122 pounds, heart rate… 70. I started Le Garden Bakery back in 2005 and made our specialty my favorite – european style bakery breads & confections. I feel so blessed today to be healthy & to be able to give back to those who must avoid gluten the way I have to. 

      Wednesday at 10:42am ·  ·  1
    •  

      Deby Colucci Self- diagnosed; husband too; also our adult son and daughter 

      Wednesday at 10:44am · 
    •  

      Charlotte R. Lafer Lafer i was diagnosed allergic to wheat but when symptoms got worse to other things they did more testing. i came up negative but most of my drs agree the symptoms fit. 

      Wednesday at 10:55am · 
    •  

      Jan Lawson My GP diagnosed. I thought I had gallbladder prob so Gen Prac sent me for tests but also threw in bloodtest for Celiac which came back positive. I was shocked at diag but it was right on – can’t remember ever feeling this good! 

      Wednesday at 11:05am · 
    •  

      Sara Adams Self diagnosed after my mother started getting sick from gluten. My brother is also allergic to wheat. Both my boyfriend and I are GF, he shows signs of the disease where I am more intolerant of it. 

      Wednesday at 11:11am · 
    •  

      Cj Kirkley I figured it out on my own and probably don’t have it as severe as others and I just feel better eating gluten free foods 

      Wednesday at 11:19am · 
    •  

      Alicja Cox Have had stomach ‘issues’ for years (15+?), doctors really never looked too hard into it, suggested quick fixes (OTC meds). Got married last year, got awesome health insurance though my husband through the Army, got the freedom to see any doctor I wanted. Found one that would finally listen to me and my thyroid problems (doctors kept dismissing me for year about it). By the time the appt came, I have had severe stomach problems for 2 weeks, being barely able to eat anything. Dr saw me doubled over, asked some questions, told her I couldn’t digest milk for 10+ year. Dr took blood work to check for celiac and vitamin deficiencies, put me on a gluten free diet. Blook work came back negative, vitamin D deficient. Diagnosed by her as gluten intolerant because I was doing SO much better gluten free. Was offered to get the endoscope or fecal test, but chose not to, I did not want to get back on gluten. I was also put on Armour Thyroid. My sister was diagnosed as celiac around the same time, my mom was told by her doctor to get off gluten ( I didn’t ask what tests or diagnosis, she does not follow gluten free diet). 

      Wednesday at 11:22am · 
    •  

      Madison Dupreay After a year of all kinds of health problems my doctor did a blood test and diagnosed me as gluten intolerant.. After a few weeks of eating gluten free It felt great to be back to normal! 

      Wednesday at 11:30am · 
    •  

      Alvin Sluis i figured it out by myself , the docters coulden’t find anything , it feels great to be gluten free, and no digestive problems and chronic fatigue anymore. 

      Wednesday at 12:48pm · 
    •  

      Pascha Hansen So many of you seem to be feeling great, I am wondering why I still am not. I have been gluten free for a couple of years now. 

      Wednesday at 1:49pm · 
    •  

      Kathy Marston I had help from a great gastro dr at chelsea and westminster hospital now retired for my 2 children. Recent gastro drs wanted to reinstate the gluten/dairy/egg/soya in their diet which we refused to do. More food allergy education is needed for doctors!! 

      Wednesday at 2:12pm · 
    •  

      Peter Huggins Like so many people, I had “stomach issues” for years, and was often told by doctors that I was either a neurotic or needed to eat more veggies or both. Finally diagnosed by my PCP and an Gastroenterologist via Colonoscopy and biopsy after being turned away from blood donation by low hematocrit. 

      Wednesday at 2:16pm · 
    •  

      Kathy Culloo MacFarland Both it has been some long 30 years of feeling sick but finally learning alot. 

      Wednesday at 3:43pm · 
    •  

      Kathy Culloo MacFarland You too. I love to let my friends know forget the testing if you feel better you know that gluten is the problem. I had a doctor who was a chiropractor who helped me tremendously. He had a person come to my home and draw the blood and sent it to Cyrex Labs and he tested me for 26 cross foods that a gluten person would be able to eat out of 26 foods I can’t tolerate 24 at least for now. If you ever want to know more about it let me know.Love Kath 

      Wednesday at 4:21pm · 
    •  

      Pascha Hansen One question, you guys seem to know a lot. I was wondering I think I know the answer any way. But.. I work in a small bakery part time, do you think handling the flour could cause me a problem? 

      Wednesday at 5:23pm · 
    •  

      Pascha Hansen I just found that out, I was rolling out danish and the flour puffed up into my face, my throat was burning and now it sounds like I have been at a concert screaming. I have a really scratchy voice now. Thanks so much for answering me John! 

      Wednesday at 8:41pm · 
    •  

      Lynda VanDusen I suffer from Fibromyalgia and have found that restricting gluten from my diet has made a huge difference in how my meds work and the way my symptoms are lessened. 

      12 hours ago · 

 

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Author Information: John Libonati, Philadelphia, PA
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached by e-mail here.


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11 Responses to “Were You Diagnosed with Gluten Sensitivity or Celiac Disease by a Doctor or Did You Figure It Out on Your Own?”

  1. Barbara says:

    My grand-niece was identified about 5 years ago. I started a gluten free diet almost 2 years ago. It’s changed my life.

  2. annieoburns says:

    I was diagnosed by way of a ‘joke’ suggestion to a doctor who was testing me for a family member’s liver disorder that might have been genetic. She commented on there needing to be a lot of blood tests done such as 10 out of 12 on her panel. When I asked what the missing ones were, one was celiac and I said ‘oh add that one in as another family member has that’. Of course all siblings should have been checked 20 years back. The sibling with liver problems later was picked up with gluten issues also.

  3. slm says:

    Iv been to the doctors, iv seen GI docs they didn’t do anything cept pushed on my stomach and say I had ibs…I had blood work, ultrasounds, x-rayss done, nothing came up…so I talked to My chiropractor Who told me to try cutting gluten out of my diet and iv been good ever since, when I stray away from gluten free food my symptoms come back…I now eat Gluten free and dairy free and try and workout every day..iv been good and symptoms free since my chiropractor helped me! Iv been good with occascional symptoms for the last few months, finally after almost 2 years of being sick, gluten is the bug :)

  4. nevin says:

    i am not yet diagnosed, but i was gf for six months, the best time ever i feel myself all my life. İ had an intolerance test which resulted not only as gluten but milk, east etc. After almost ten years, every year new health isseus were arrising, as i knew i am not paranoid, diging illnesses, i decided to take such a test. İ had extreme rheumatoid pain, not able to be diagnosed but proffesionals. Many other health issues, which were screaming “unnatural sitaution”, but it was only me who heard that scream. İ am on gluten diet to be able to be tested for celiac, and i can not wait to turn back to my gf life. Just in six months…is not that so clear that all my problems are just because of this gluten thing?

  5. Darlene says:

    I was dx’d by a doc after I insisted on the test….after 10 years of her trying to figure out what was wrong with me and a clean colonoscopy!

  6. A lifetime of abdominal pain! Lots of doctor visits. Lots of misdiagnosis. Lots of wrong drugs. Thankfully no surgeries. At 25, 1 Doctor blood tested me positive for an auto-immune disease. At 30, read an article about Celiac Disease; I had all the same symptoms. Tried the gluten-free diet. For the first time in my life, no belly pain, thinking clearly, good memory recall, no blisters on gums, pooped daily, felt sane and happy.
    It was a challenge to make the diet transition, but never been happier or healthier.
    I too have a little Irish in me, if that means anything, and had very similar experience to Kit.

  7. Renee says:

    I was admitted to the ER and later diagnosed by a gastroenterologist after a colonoscopy and endoscopy. He guesses I have had the disease for 22 years.

  8. Pam HT says:

    Celiac disease is a very common disease (1 in 133), but commonly undiagnosed or misdiagnosed. It can have very serious symptoms. Mine included severe anema (requiring iron infusions), neuropathies, osteopenia, arthritis and bone problems, GI problems, and malabsorption. It took several GI doctors over 11 years to diagnose me and I’ve been gluten free for almost 4 years now.

  9. Kit Kellison says:

    In the 13 years I was sick as a dog and often bedridden with crippling brain fog and short-term memory problems, severe muscle and joint pain, insomnia, anxiety, extreme fatigue and, for the last of those 2-3 years, with chronic diarrhea. I’d seen at least 22 doctors (we moved every year or two with my husband’s job). Because I had anxiety, I was suspected of being a hypochondriac. I was misdiagnosed with Lupus because of slightly elevated ANA. I was told by GPs and rheumatologists that I had fibromyalgia and that the pain and symptoms could only be managed. I was on various antidepressants, one after another, Ambien for insomnia, Flexeril for muscle pain, as well as various other meds. My insurance company was spending thousands a year on all these meds.
    Finally, at my gynecologist’s office, he noticed a lot of pain around my abdomen and, after scheduling me for an ultrasound to check for uterine problems, insisted that I not leave his office until I got an appointment with a well-regarded gastroenterologist. It wasn’t the GI who knew about celiac disease, it was his young physician’s assistant who got me the blood test which required the follow-up biopsy. It was then thought that celiac disease was more common to the Irish, and I have to wonder whether my brief stint as the redhead I was on that first visit had anything to do with her suspicion!

  10. Tina says:

    After 5 years of dealing with pediatricians, internists and MD’s that did not help our son, we went to an alternative healthcare practitioner who suspected Celiac after our FIRST visit. She sent us for the blood tests which were astronomically high and than we went to a great Gastroenterologist for a biopsy to have it confirmed. His digestive tract was so scalloped, inflamed and damaged that the gastro was amazed that someone didn’t send him to her LONG ago.

  11. MotherMacri says:

    I was diagnosed by my gastroenterologist (sp?)but only after I demanded and fought for the blood test from my primary care doctor. The blood test came back off the charts and when I had the biopsy done the lab had to call the doctor to confirm that they were checking for Celiacs and not Khrones because the inflammation of my digestive track was so bad.

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