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It’s not all in your head. It could be gluten.

Posted on August 3rd, 2011 by Alison Read 12 Comments - Add Your Own »

“It’s all in your head” is the response more than one patient has received from a doctor after hearing about the patient’s health problems. I have heard this story from people who write to me looking for answers, and the fact that a doctor could be so dismissive of one’s health braincomplaints is frustrating and upsetting. Those that write me an email like the one I am sharing below have already taken the steps to find out what is wrong, and have discovered that by cutting out gluten, many if not all of their symptoms have resolved. I wonder how many others end up believing that it is in their heads, that there is no cure for their ailments, no hope to feel better. Gluten can indeed affect the head — with anxiety, depression, migraines, seizures, ADD and OCD, and even schizophrenia, but I doubt that’s what those doctors meant.

Here is an email I received recently:

“I’m sure you’re extremely busy, so I understand if you cannot respond to this email immediately, but I am desperate and would love your advice. I’m 27 years old.  I endured some abuse about a year into my marriage. I’ve been divorced about a year and a half, so my life is in a calm, peaceful place now. My body, on the other hand, has been rebelling.

I was suffering night sweats, joint pain, belly bloat, terrible gas, and recurrent mouth sores that absolutely cover my mouth making it impossible to eat. I went on a gluten free diet about 8 months ago, and I found relief from almost all of those symptoms. If I go back on wheat, the symptoms return. My doctor tested me for celiac disease and the results came back negative. I had been on a gluten-free diet for quite some time I thought it was possible that could’ve affected the outcome of the blood test, but my doctor refuses to look into the matter any further. She blames my problems on anxiety and post-traumatic stress. I agree that stress is a factor, but is it possible stress sparked the digestive issues? I’ve had problems with IBS, specifically constipation, since the day I was born, and have also been lactose intolerant all my life. So digestive complications are nothing new.

She acts like it’s all in my mind, which makes me feel so defeated. I don’t know where to go from here, but as someone with so much knowledge on the subject, I would value your advice more that I can tell you.”

In my answer to her, I told her that it is not in her mind, but rather her stomach! I also told her that her doctor sounds dismissive and ignorant and that she on the the other hand, sounds like she knows exactly what is going on. If she feels better off the gluten, that is her proof.

Celiac disease and gluten intolerance can indeed be triggered by stress, although it sounds like she already had symptoms long before. The stress could have turned it up a notch, or due to her radical lifestyle change she may have altered her diet to have more gluten in it, thereby making her symptoms worse.

“Where do I go from here?” she asked at the end of the email. Where do you go from here? You stay gluten-free if you feel better, you tell people you have a gluten intolerance or sensitivity or gluten allergy or whatever you want to call it, and you say it with confidence! It really doesn’t matter what anyone else thinks about it — do what is right for you.

I wish this reader well, and I hope that her email touches someone else out there struggling with the same obstacles. If anyone else has advice for those that are wondering if it’s all in their heads, please add your comments!

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  1. I would also suggest she get another doctor. No one knows a body more than the owner. There are many times I go to the doctor and I already know what is wrong with me. It comes with experience and being the driver over many miles! It would be like taking your car to the mechanic and he refuses to read the computer codes.

  2. As always Alison, you are right on! It is so sad that doctors, family, whom ever, dismiss the symptoms as being in our heads. You know I understand this, since I dealt with it with Abigail and then with myself. I agree with you, stay gluten free!! She need to know you do not need to justify your health to anyone!! Be gf, be healthy and above all be happy!!


  3. Definitely get a new doctor. The same thing happened to my daughter, in fact her doctor wanted her to see a therapist!
    She said no, got a new doctor, and a correct diagnosis, celiac disease. Deb

  4. I’m so glad you addressed this issue – I’m guessing it’s pretty common. Kudos to the young woman who had the fortitude and courage to email you and ask for advice. Not always easy to do when you’ve been dismissed by your doctor. Six months before my Celiac diagnosis, I visited three dermatologists before the third one finally suggested a hormone test which diagnosed me with Alopecia. Though he didn’t make the connection with Alopecia and Celiac, his diagnosis of my Alopecia led me to read the book “Dangerous Grains” by Dr. Ron Hoggan. And reading that book led me to ask my internist to do a TTG test on me – and this was the beginning of my healing journey. The results came back positive for Celiac. I went gluten free and within two years, 75% of my hair grew back. Not to mention – the intestinal (and other) issues I’d been having finally abated and I am now a new woman. So yes, we must each be our own advocate. Stay the course and know that sometimes our own anecdotal experience can be enough to encourage us to make changes for the better.

  5. Thanks Ellen,
    I’ve known your story for a long time (see Ellen’s Story) and it is a great example of how one symptom (hair loss — an important one) can be the sign that something else is going on.

  6. For 5 yrs we have been seeing doctors 3yrs ago they said celiac disease. Went on gluten free diet still sick no one cares or wants to help my 13yr old daughter is suffering the school called the state cause she was out sick, left her back and now the state wants to take her away. Not one of them will do a google search to see its not in her head. they also suggested a therapist, we’ve seen 4 who say its not in her head. If anyone can help us i would really appreciate it.

  7. My husband and I have a virtual clinic and we do some great gluten testing with Cyrex laboratories and Entero Labs. Entero has a great DNA test for gluten that is conclusive, even if you haven’t eaten gluten in a while. Cyrex labs has some very advanced allergy testing as well as gluten and gluten relatives. If you go to my site and click on gluten resources you can read about both labs. After testing over a year and a half ago I eliminated gluten and most grains from my diet. The biggest difference that is measurable and not just anecdotal is I no longer have osteoporosis!

  8. Thank you so much for creating this post. Before I was diagnosed I actually thought that it was all in my head and my doctor, while not dismissive, certainly wasn’t as helpful as he could have been. I created a food diary and marked whenever my symptoms got really bad and they just waved it off. If it wasn’t for my friend’s mother suggesting I go off dairy and gluten and then add each back into my diet I never would have known what was making me feel bad. After that I went to a great GI who said ‘If this isn’t Celiac I’ll eat my hat!’ and after the routine tests we got the answer to why I’d been feeling so wrong. But I appreciate the post, I think it’s important for people to know it isn’t in your head and if they’re suffering they should get checked out.

    Thanks again!

  9. As a endoscopy-diagnosed celiac, I’d add one thing: I do believe it’s important for a person to endure eating gluten again, for a substantive period of time, to do the bloodwork and have an endoscopy. Why would I advocate such misery for a person who clearly feels better off gluten?

    Here’s the thing: it’s not clear that people who are gluten-intolerant have the same disease profiles as diagnosed celiacs. That’s not to say they don’t suffer or don’t benefit from a GF diet–but celiac can cause other problems and knowing for sure that I have celiac has helped my GI and other docs figure out secondary issues. Knowing that you have celiac makes other issues likely–knowing that you DON’T have celiac should compel your doc to think more broadly. Good luck.

  10. My own experience with gluten is perhaps less drastic than a diagnosis of celiacs – or perhaps I have intervened with a gluten free diet early to avoid the digestive issues. I first through accident that eating more wheat (pasta , bread etc …) increased joint pain & feelings of weakness in my knees – I have osteoarthritis in my knees. After reading a lot about gluten & suspected effects apart from celiacs I tried a 2 wk elimination trial – no wheat at all. Then I ate a sandwich with our regular multigrain bread.. Well the reaction was swift (not as swift as allergy and probably not as swift as the reaction for someone with celiacs, but within about a day & a half, my knees were stiffer, sorer and weaker. Proof enough of a connection for me. I have been gluten free since Dec 2005, and while I still have arthritis, the symptoms are not nearly as severe – and bonus here – when I have a flare up (it happens) it is so much less severe that I have to think about it to realize what is happening. So perhaps I would have developed celiacs in time, I don’t know, but I do know that eating gluten free is what I will happily do for the rest of my life. The reduction in pain and increased joint mobility and strength is well worth the change. And by the way – all those other non gluten grains make really tasty food MMMM. So no loss of enjoyment either.

  11. Thank you for sharing this. It’s always disappointing to read of doctor’s not respecting a patient’s own views and realising their contribution can be so valuable in diagnosis and treatment. I tested negative to Celiac, but my father is positive, so when I was diagnosed with Arthritis at 22, I completely changed my diet – no gluten and a few other things – and my inflammation has decreased incredibly. And this was an action I took against my doctor’s assurances that there was nothing diet could do for me.

    We know our bodies, they tell us what we need and it’s so important to trust our own heads and bodies.

  12. Well Im reading this as I lay in bed getting over a stomach virus… or is it????? I have the same issues that your young 27 year old reader stated…and I also read the blog posted about “what kind of reactions do you have to gluten”… went thru a hellish nightmare of a divorce that took 2 1/2 years to get thru…stressed out always sick with stomach bowel issues…went to my doctor, celiacs test came back negative and I started a gluten free diet on my own.( after I got the look from the doctor like~ I dont know whats wrong with you look) Since then I have felt a lot better and as of now Im trying to figure out if I actually have a stomach virus or if I accidentally ate something with gluten in it! I am a professional chef and I work in a kitchen for a national magazine developing recipes every day. Having a lot of knowledge about food one would think that its easy for me to avoid gluten! Im thinking that I may have gotten thrown a curve ball this week. So Im regrouping here in bed with what ever it is that I have and ill keep plugging away at a GF lifestyle cuz thats what works best for me! Be strong and never let the gluten monsters win! LOL~:)

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