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Hi All!

I'm new on the site. I found out in January that my brother has celiac. I decided to do an elimination diet to see if I noticed a difference. (I cut out gluten for 1 month and the only difference I really noticed was that I became regular whereas before I alternated between diarrhea and constipation; sometimes in the same day.) Flash-forward to Friday, I decided to go in to get tested officially (because the diet didn't seem to change anything) so I reintroduced gluten into my diet to prepare for my blood test. 

Whoo-boy. I broke out in an itchy rash, almost immediately had a headache, and my old neck and shoulder injuries flared up big time. I also haven't fully eliminated since (it's now Monday morning). I'm now trying to decide if I should go forward with the blood test and eventual endoscopy, or if I should just be tested for the gene because regardless of whether I have celiac or gluten intolerance or a wheat allergy, I really don't want to eat it ever again anyway. 

Okay. Let me get to the point. I've had trichotillomania (hair pulling disorder) since I was six years old. I pull primarily from my scalp. I did notice a slight decrease in my pulling while I was gluten-free, but what was most apparent was how itchy my scalp got immediately after eating gluten (less than 30 minutes after). The rash started on my scalp and moved down my body in a wave of itchiness. And while it remained primarily on my upper body, it was between my toes as well (I have struggled for years with athletes foot and toenail fungus). 

If there are any other trich sufferers here, (or even anyone who has dealt with long-term fungal infections), I'd like to hear if you've noticed a difference after going gluten-free, or if you think the two are related. Could it be that my trich started as a reaction to gluten? I had read theories that trich could be triggered by an over-abundance of yeast on the scalp but was so surprised that the gluten made me immediately get that itchiness that drives me to pull. 

Any insight will be much appreciated. Thank you!

Edited by chrissy-b

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2 hours ago, chrissy-b said:

Hi All!

I'm new on the site. I found out in January that my brother has celiac. I decided to do an elimination diet to see if I noticed a difference. (I cut out gluten for 1 month and the only difference I really noticed was that I became regular whereas before I alternated between diarrhea and constipation; sometimes in the same day.) Flash-forward to Friday, I decided to go in to get tested officially (because the diet didn't seem to change anything) so I reintroduced gluten into my diet to prepare for my blood test. 

Whoo-boy. I broke out in an itchy rash, almost immediately had a headache, and my old neck and shoulder injuries flared up big time. I also haven't fully eliminated since (it's now Monday morning). I'm now trying to decide if I should go forward with the blood test and eventual endoscopy, or if I should just be tested for the gene because regardless of whether I have celiac or gluten intolerance or a wheat allergy, I really don't want to eat it ever again anyway. 

Okay. Let me get to the point. I've had trichotillomania (hair pulling disorder) since I was six years old. I pull primarily from my scalp. I did notice a slight decrease in my pulling while I was gluten-free, but what was most apparent was how itchy my scalp got immediately after eating gluten (less than 30 minutes after). The rash started on my scalp and moved down my body in a wave of itchiness. And while it remained primarily on my upper body, it was between my toes as well (I have struggled for years with athletes foot and toenail fungus). 

If there are any other trich sufferers here, (or even anyone who has dealt with long-term fungal infections), I'd like to hear if you've noticed a difference after going gluten-free, or if you think the two are related. Could it be that my trich started as a reaction to gluten? I had read theories that trich could be triggered by an over-abundance of yeast on the scalp but was so surprised that the gluten made me immediately get that itchiness that drives me to pull. 

Any insight will be much appreciated. Thank you!

The gene test may just reveal that you carry the genes, but the proble is that roughly 35% of the population has those genes yet only a few go on to develop celiac disease.  Having a first-degree relative puts you at a higher risk for developing celiac disease.  It is recommended that ALL first degree relatives be screened even if they are asymptomatic.  

Consult with your doctor (you should be under the care of one when doing a gluten challenge). 

It is up to you whether or not you get a firm diagnosis. I can tell you that my hubby went gluten-free (17 years ago) per the poor advice of two medical doctors.  It worked.  He is doing great, but he would be the first to say that I have had way more family, friend and medical, yes medical, support with my firm diagnosis (5 years ago).  

I bet your other symptoms are connected or at least made worse by an autoimmune flare-up.  But I am not a doctor.  

Get the rest of your family tested before they trial a gluten-free diet! 

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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10 minutes ago, cyclinglady said:

It is up to you whether or not you get a firm diagnosis. I can tell you that my hubby went gluten-free (17 years ago) per the poor advice of two medical doctors.  It worked.  He is doing great, but he would be the first to say that I have had way more family, friend and medical, yes medical, support with my firm diagnosis (5 years ago).  

Thanks for the advice, cyclinglady!

I wish I had medical support. I really need to find a new doctor. My current doctor does not think I even need to be tested despite my brother's diagnosis because I didn't have any painful/major symptoms until I re-introduced gluten. I would be paying for the blood/genetic testing out of pocket because he doesn't think there's anything wrong with me. I was thinking that with a gene test or a blood test on my own, my doctor would actually start listening to me. 

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I would dump this doctor.  Or, if that is not possible, write a letter, send it registered mail and include medical documentation indicating screening for first-degree relatives like this: 

http://www.cureceliacdisease.org/?s=relatives

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-14-36

http://www.gastro.org/press_releases/spouses-relatives-of-celiac-disease-patients-at-risk-for-autoimmune-diseases

If no response, (be nice in the letter), then report him to the medical board.  Bet he will be willing test you in order to avoid a lawsuit.  In the meantime, try to find a new doctor.  That would be my non-medical, but I am a no-nonsense Mom advice!  

Just wanted to add that my kid had been tested for celiac disease.  She received the full panel.  I went in to our PCP with the data indicating that all first degree relatives should be tested even if symptom free.  Her doctor did not hesitate!  

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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Thanks for the links!

Oh yes, I agree! I want to dump him. I could see my brother's doctor who diagnosed him but she doesn't take my insurance (I don't have the best insurance plan), so I'd have to pay out of pocket for that too. I am just not looking forward to having to find a new doctor that takes my insurance. 

Edited by chrissy-b

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2 hours ago, chrissy-b said:

Thanks for the links!

Oh yes, I agree! I want to dump him. I could see my brother's doctor who diagnosed him but she doesn't take my insurance (I don't have the best insurance plan), so I'd have to pay out of pocket for that too. I am just not looking forward to having to find a new doctor that takes my insurance. 

Call your insurance company. They should be able to send you a list of doctors they work with and may even know who is accepting new patients. Meanwhile get copies of all your tests and results. Good luck and hope you are feeling better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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