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It’s Not In My Head: Celiac

It's Not In My Head

Most of us know what it’s like to be sick. Most of us with celiac know what it’s like to be sick and to have doctors look at us like it’s all in our heads. And this can often last for YEARS! (For me, it took decades before I could say, “It’s not in my head!”)

How many of us have wanted to scream, “It’s not in my head!” 

Angela was 40 when she became suddenly and intensely ill. She was so sick that she lost 40 pounds in just 6 weeks. She had to take a medical leave from work. Vomiting. Diarrhea. No appetite. Dizziness. Anxiety. Tremors. Constant nausea. Severe headaches. 

These symptoms were very real, but she was told they were all connected to anxiety. 

Angela found herself in the ER nine times in two months. She also visited her primary care physician three times. The answers she was given: Stomach virus. Anxiety.

"I thought I was dying."

When she told her doctor she couldn’t keep anything down, guess what he told her to eat? Toast. 

I can only imagine how fearful she must have been to be so sick, and how frustrated she must have been over the lack of answers. “I thought I was dying,” she shared.

A Test ~ An Answer 

At her ninth visit to the ER, Angela was finally sent to a gastroenterologist. This specialist, however, also made her feel that her symptoms were in her head.

Could this be one reason why SO MANY of those with celiac are still un-diagnosed?! I will never understand why there remains such a lack of education about one of the most common genetic autoimmune diseases. 

According to Angela, he “begrudgingly set up an upper endoscopy and lab work.”

Why is it so hard to get a test? I hear this all.the.time, and every single time, I fail to understand it.

But lab work and a biopsy provided Angela with an answer. Both were positive for celiac. The doctor was surprised.

A Possible Upside

I like to see silver linings. Maybe Angela’s diagnosis has increased her doctor’s awareness and understanding of celiac disease. He was, after all, surprised by the test results. Yes, I’m an optimist. We can hope that he now tests for celiac more often.

What Triggered The Onset Of Celiac?

“My doctors now think an injection I received in late July triggered my celiac,” Angela shared. 

She experienced a severe reaction to an immunotherapy injection that she received from her dermatologist. Her GI symptoms started after this injection. She had no GI issues prior to this particular medication. Prior to getting so sick, “Everyone laughed that I had an iron stomach and could eat anything,” she shared.

Other Autoimmune Diseases

Nope, many of us can’t have just one autoimmune disease. Twelve years prior to her celiac diagnosis, Angela discovered she had Graves disease, an autoimmune disorder that causes an overactive thyroid. It is not uncommon to have thyroid disease and celiac disease.

Post celiac diagnosis, Angela also discovered she had reactive hypoglycemia. I had to look that up. I didn’t know what that was. According to this article from Mayo Clinic, “Reactive hypoglycemia refers to low blood sugar that occurs after a meal — usually within four hours after eating.”

The reactive hypoglycemia was much worse right after she was diagnosed with celiac but has greatly improved after being gluten free for six months.

Six Months Gluten Free

Angela has been gluten free for six months. All those horrible symptoms are gone (unless she accidentally gets gluten). But she is very careful. And the proof is in the pudding. “My antibody levels have gone from 186 to 5 in six months of being gluten free.” 


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This Post Has 9 Comments

  1. Angela

    That’s my story. Now, I’m at 2 years gluten free/post diagnosis. My antibodies are totally negative now. 🙂

    1. Debbie Simpson

      Great to hear! Thank you for letting me share your story 🙂

  2. Sybil

    Interesting to read this again and see a few other things; CD is not really that common. It is considered the most difficult autoimmune disease to diagnose as it can mask as so many others. While the numbers say 1/100, I am beginning to think it is much more common as so many are still undiagnosed. Still others do not follow the diet nor believe they have it- (I’ve met a few) and yes, undiagnosed it has a much greater chance of leading to a digestive cancer, etc. Many Board Certified gastro docs now request a celiac panel first along with a genetic test rather than force those already on the diet to eat gluten. Too many end up in hospitals sicker than before. The problem really is the medical schools. Less than 15 min is spent on CD and they are told they will probably never see it! Some docs still do not believe it’s real!! I think the various medical assoc could do a lot more too as well as the quarterly magazines like JAMA. My hope also is some day things will change. That mlovie could make a difference!

    1. Debbie Simpson

      Sybil, did you mean CD is not really that un-common? I agree with you—-I think its more common than 1/100 as well, (or at least non-celiac gluten sensitivity). So many are just trying gluten free on their own without being tested (or even advised by their physician to ‘give it a try’). This results in decreased stats—PLUS—-the lack of a correct diagnosis could easily result in a decreased view of the need to be 100% compliant, which is frightening. (Plus, other health issues might be overlooked, thinking gluten free is the only answer). When I was diagnosed, in 2000, stats for celiac were 1:250. The 1:133 stats were released through a 2003 study. Routine screening could help SO many! “They” say “cost,” but sheesh — the cost of being sick is far greater.

      1. Sybil

        Yes, although med schools claim “it is so rare docs will never see it”– I believe that is wrong and it is much more common than we believe- earlier and more accurate diagnoses would prove that – and using the simple celiac panel plus the genetic test would make the whole process less scary and invasive. The reason many people do not go thru that endoscopy is they are afraid of having to eat gluten and getting sick. Which makes sense. Why make people sicker? Also wish the info on the internet was more accurate- makes me crazy to see some of the myths and other crap on many sites. You and I are on the same page I was “diagnosed” in 2004 with NCGS just when that 1:133 number came out. Now it is 1:100. Routine screening would be so easy to do, too.

  3. Laura J Miller

    I met with a friend this week. She has had multiple serious diseases, including cancer, so she has seen many doctors including naturopaths. One month ago a doctor told her to quit eating “flour”. She did. Her life time of tummy issues etc. went away in days. One day she tried eating one piece of breaded chicken for lunch, and it all came roaring back. Through all the years of intense medical treatments, no one ever tested her.

    1. Debbie Simpson

      SO much about this bothers the heck out of me! First, the good thing is that she is finally getting relief. But, “quit eating flour.” ?? ugh! That suggestion from a medical professional without testing for celiac always hits a nerve. PLEASE PLEASE PLEASE test for celiac first. That diagnosis lets a patient know they must avoid every speck of gluten, rather than a general avoidance. Wow! I am always so sad when I hear of someone going through so much unnecessarily. I’m sure she is (or will) wonder if her cancer was connected. Hoping she is now on the path to wellness.

  4. Sybil Nassau

    Deb- what is so especially sad to me- and not surprising, is after 12 years in this business I can’t even count how many times I have heard this story from members. And read it online too- And the fact that too many GI doctors are still in the dark failing to recognize the symptoms. Ok, so we know there are 300 + symptoms which can be other diseases or conditions as well.. So, maybe my GI doc has the right idea and the first thing he does is a genetic test to see if one or both of the genes is present.Then he does a vitamin panel checking both D and B12. The fact that Angela had Graves disease to start with should have been a clue that another autoimmune condition was present. What a shame she suffered so much. If all children born in Italy are tested before they are 10 years old BY LAW, why can’t all kids be tested before the age of 5? As CD is a body-wide disease affecting teeth, bones and brain- why shouldn’t we be pushing for this? All of the national celiac groups? Everyone involved? I just don’t get it. If someone knows they have CD in their family, would they not insist a child be checked? Hello?

    1. Debbie Simpson

      I couldn’t agree with you more, Sybil. I don’t get it. Ever! So that is my small effort with these stories–to at least reach some of those who are wondering, “what is wrong,” and encouraging the request for testing. Of course, then we face the problem with too many doctors refusing to test even when it is requested. Again, I don’t get that either. Frustrating indeed. So we just keep plugging along, planting seeds. One day.

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