Celiac & Gluten-Free Health Information and Resources

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Our Experiences   Skin Conditions

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Celiac, coeliac or gluten intolerance, (including dermatitis herpetiformis) are becoming more common all around the world.  It is a genetic disorder that affects 1 out of 133 Americans.  (Found at: Celiac.com.)  Other sites mention 150.  Gluten was introduced to various countries which included: Europe-especially northernwestern Europe, Sweden, Britain, Ireland, Scotland, the United States, and other countries.  My husband read in an article about the Romans (I think it was them.) wanted a fluffier loaf of bread so they started to crossbred wheats to make a high gluten wheat.  They kept moving north and introduced it to the different countries that didn't have it there before.  Some adapted and others did not adapt as well which left them gluten intolerant. (I'm not sure if this is all accurate buy my husband could correct me and write more about this.)  At: Coeliac Disease, I read that it is more common in Ireland than in Britain.  Many people are unaware they might be gluten intolerant so be sure to READ more about it at the below sites to know the symptoms of this disease.  Those that are celiac or gluten intolerant can not have any eat any gluten or have cross contamination in his/her diet because the villi that is found in the small intestine, needs to heal.  You can not eat any gluten for your entire life or your small intestine will be be damaged.  I have read at: Celiac.com, you can have immediate reactions if you eat gluten or it may take awhile to react. 

Added 5/24/05: There are various sites that have information about celiac disease. One site to check out before any other site is: Detecting Celiac Disease in Your Patients - March 1, 1998 - American Academy of Family Physicians.  (There are photos of various skin conditions, symptoms, deficiencies, etc.) Also, go to the below links for more resources.  Sometimes trying to discover the real health problem takes a lot of effort, going gluten-free, and waiting for a long time to know if you really are gluten intolerant but it is worth all that extra effort.  If you feel better, skin and health conditions get better, etc. then it's worth it.  Not all test will prove you are celiac.  I had a false negative blood test but a positive reactions when I touch gluten.  The blood test might not be accurate but you still might be celiac.  If you didn't have a biopsy taken, then you are at least severely gluten intolerant.  Let your own TOTAL gluten avoidance be the true test.  (I did.)  Of course, there might be other health problems that might be taken care of so doctors are a way to find out those.  (I just happen to know I don't have any other health problem at this point in my life-at age 35+.)  Good luck at feeling better or if you don't think you are celiac, think about it even more, research more, and let your intuition let you know if you might be celiac (or at least gluten intolerant).

Informative Links
ASD Central: Gluten-Free, Casein-Free Diet
Including products.
Celiac Disease Celiac disease can get confused with other diseases.
Celiac.com
Celiac.com (Frequently Asked Questions)
Celiac Disease/Gluten Intolerance @ about.com
Celiac Disease On-Line Support Group

Celiac Frequently Asked Questions (FAQ)
Coeliac Disease
Gluten intolerance and Celiac Disease | Foodintol.com New 9/30/06  Make sure you check this web site out.
Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than Your Think - December 15, 2002 - American Family Physician
Gluten Intolerance @ about.com
Introduction to Celiac Disease, Dermatitis Herpetiformis, and Wheat Allergy
Is it really wheat allergy? These are not all of the symptoms.
The Celiac/Autoimmune Thyroid Connection
Whole Foods Market: Health Info: Gluten-Free

Organizations
Asistencia al Celíaco de la Argentina
Canadian Celiac Association
Celiac Sprue Association CSA/USA Official Website
Clan Thompson's Celiac Site Celiac Associations World Wide
Coeliac Society of Ireland
Gluten Intolerance Group of North America
International Coeliac Societies
Svenska Celiakiforbundet - Sweden
The Coeliac Society of Australia Including information on Dermatitis Herpetiformis

Dermatitis Herpetiformis (DH) Links
Celiac.com: What is dermatitis herpetiformis? What does it have to do with celiac disease?
DermIS: Dermatitis Herpetiformis Duhring / Images
Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than Your Think - December 15, 2002 - American Family Physician
Introduction to Celiac Disease, Dermatitis Herpetiformis, and Wheat Allergy)
MedlinePlus Medical Encylopedia: Dermatitis herpetiformis Photos and information
What is Dermatitis Herpetiformis? Including a photo.
Google Search: Dermatitis Herpetiformis

Other Skin Disorders Caused by Celiac Disease
Cutaneous manifestations in Celiac Disease @ World Journal of Gastroenterology


Our Experiences

Barbara's Experiences
I have always been very thin.  I am about 5 foot 4 inches and was just over 100 pounds (until I got pregnant in March 2004).  I have had a hard time to keep my weight on.  I did gain 40 pounds when I was pregnant with each of my two children and I lost all of it and more.  I always thought I had a high metabolism but maybe my small intestines wasn't processing food.  I didn't think I might be gluten intolerant (since I had no small intestine biopsy done) until I started researching some symptoms of celiac on the web.  Some include: dermatitis herpetiformis, urticaria (hives), skinny (some celiacs are heavier), lactose intolerant, Irritable Bowel Syndrome- IBS; and lots of other symptoms.  My father was lactose intolerant (he passed away in 1994) and so is my sister.  Maybe his mother (my grandmother) had it too.  Not all celiacs are skinny.  (Some may be larger and not realize they are.)  The villi (found in the small intestines) is where celiacs have problems with digesting food, lactose, fat, etc.  Another symptom of celiac is osteoporosis.  My father and my grandmother had this, and my other grandmother had it too.  My descendants are from Ireland, Scotland, England, Germany, and other countries which have celiacs.  My grandmother's family (on my father's side) is from Ireland and her father's side is from Scotland.  I really suspect I'm celiac and probably my Dad and grandmother were since my grandmother relatives are from Ireland and that is one of the countries with the largest number of celiacs.

Skin Conditions

Dermatitis Herpetiformis (DH) is a very itchy skin disease that is not herpes.  I am certain I have this.  At: The Dermatitis Herpetiformis Online Community: Q's & A's - An outline of the symptoms of DH it has the symptoms that says it is a group of itchy blisters that can be on red plaques. (I thought those white bumps were just part of my skin since I have had them since I can remember.  Well, it was DH and it turns into pink bumps that itch like crazy.)  It also says that it is associated with celiac disease but it is in the "latent CD in the majority".  I might have eczema or some other skin condition but the hydrocortisone creams never stopped the itch like it says it will.  The itch got bad at night.  It took me forever to fall asleep or wake up and sometimes I couldn't fall back to sleep for along time because of the itch.  At: Celiac.com,  it states: "While most individuals with DH do not have obvious GI symptoms, almost all have some damage in their intestine." 

I have some skin condition off and on for at least ten to twelve years (when I was in my early 20's).  I noticed it again in the beginning of December 2003.  This is when I started baking more baked goods for friends. I ate a batch for our family.  I also noticed the sores and red pimple-like sores get worse on my one leg and somewhat on the other leg.  Some of them looked like letter C's.  Liquid comes out of my pink spots. About a week before going gluten-free, we were eating a pasta dinner.  I told my husband I can never not eat wheat.  Well, on December 20 (lunchtime) I started a gluten-free/wheat-free diet.  I did not want to be so itchy and have my legs covered with some skin condition. It was hard to fall asleep at night because it itched SO BAD. One more DH came as I was on a gluten-free diet.  It was on the back of my legs.  The itch stopped after eliminating gluten/wheat out of my diet but I do get some itching after taking showers or other times.  In December 2004, I started to put aloe vera on my legs and it really got bad.  I stopped that sometime in January.  In January 2004, I showed my leg to a friend in a local homeschooling group and she said her husband has those kind of bumps on his legs.  (Go to the below links to read more about this and view photos of this skin disease.)  Remember not to itch the bumps or sores because it gets worse.  I have read that once you are on a gluten-free diet, it can take 2 years or more to clear the IgA deposits under the skin.  I'm still hoping I don't have these IgA deposits all my life.  (Source: gluten.net: treatment)

Added August 3, 2004
On June 21, 2004, I was not happy having itchy, scabby sores on my legs.  The pink spots and white bumps (most likely dermatitis herpetiformis) were gone from not eating gluten but there was something else (most likely it was ezcema which could have been from a food allergy or more than one). I read online that Cetaphil cream will help cure eczema for one person so I tried that (well, Kroger generic brand) after the emu oil didn't help.  I had been using it just for a few days and I noticed an improvement.  Most of the larger spots that had clear liquid in them went away.  I only put some cream on my legs once in awhile to help with the dryness.  I'm glad I don't have to worry about my legs anymore.

January 2005
Added 2/2/05
My father-in-law took us out to Outback Steakhouse last month.  I asked the waitress for some more aluminum foil for our extra food. She placed them right against the bread.  Well, I brushed it off with my fingers.  I knew I would react from it (I did either the next day or sometime soon after that).   Last year, I had touched a gluten sponge at a friends house and I reacted immediately from it.  DH itches and it hurts worse when you touch it or hit your hand against something.  I know I'm gluten intolerant (and most likely celiac if I had a biopsy done) since when I touch gluten, I react to it.  If you have DH, you are celiac (no matter if you have no other celiac symptoms or if you do).

I think my Dermatitis Herpetiformis got better while I was pregnant last year.  (I read that when you are pregnant your body makes something to help the skin not itch.  I can't remember what it is.) Once I had my baby girl in November 2004, it started up again.  It isn't as bad as it was but I have spots on my upper legs and also my lower legs.  I have been putting cream on it and it does help the itching some.  I'm trying not to squeeze the liquid out of it but sometimes that is the only thing that helps the itching to go away.  I'm trying not to do that so they can heal.  Sometimes I get more DH but I put cream on them and it helps out a lot.  Sometime in the beginning of May 2005, I got another two more DH bumps on my right arm. One I popped and then I saw another one.  I decided to leave the second one alone.  That eventually went away.  In the middle of May, I got another on my left arm. I decided not to pop it to see if it went away.  It is healing.  It only itched once in awhile.  I'm learning not to do anything with them since they do go away.  In April 2005, my legs got worse and itched like crazy.  What did I do, yes, I itched them and popped the liquid bumps.  In the middle of May, I decided not to touch them anymore and put cream on them to see if they would get better.   They are slowly getting better.  (Now, if they go away completely.)

Other Skin Problems I noticed when I was pregnant with my two children.  The patches of brownish (and sometimes slightly pink) blotches of skin started again when I stopped nursing my 32 month old son in July 2001.  Early December 2003, I did not know what this condition was until I started researching the possibility of me being celiac.  I have noticed it getting much larger near my shoulders this year (2003) and it can itch.  This is another condition that a celiac might have.  I found this out when I read the article at: Urticaria and adult celiac disease - Allergy.  It might be a wheat allergy but I don't think so.  I noticed that the small welts that I had (which I thought were bug bites) went away after I stopped eating gluten (or maybe it was wheat).  Also, the itch of the larger patch of hives went away.  They have not disappeared but they only itch once in awhile.

Other Health Problems
I have hay fever, slight asthma (due to perfume, fragrance, cigarette smell, etc.).  I am lactose intolerant.  Off and on, I have had abdomen pains, noisy intestines (usually before a bowel movement but mostly when I was going to have diarrhea), entire sore body, tiredness, loud belching and bloated feeling while eating lots of pasta with wheat flour in the sauce, DH, hives/welts, some bumps on my hands, canker sores, slight burning sore throat, I would loose some weight after a large bowel movement, diarrhea, constipation, weakness, headaches, sore knee joints, sometimes irritable, skinny, I couldn't think straight, drop the keys out of my hands, got sick a lot, white bumps on my legs and my top part of my arm, and maybe more symptoms.  I was sick in the middle of September 2003, then the end of October, in November (where I almost lost my voice all of those times) and then in December. (I didn't loose my voice that time.)  That was too many times to be sick.

5/13/05: I got sick for the first time since going gluten-free.  It was not nearly as bad as I did when I ate gluten.  I think I got sick because I have been going to bed late and was getting up more doing the night because my six month old daughter wanted to nurse.  I think my son gave it to me.

My Blood Test Results
I received my blood test result back on January 13, 2004. 
This is what my results were: AGA-IgG: 5.4 (<32.0 AU is normal); AGA-IgA: 1.4 (<7.0 AU is normal); EMA: Negative; tTG-IgA: 0.9 (<7.0 AU is normal); tTG-IgG: 9.3 (<26 AU is normal).

I don't think I had enough of gluten in my body to get a positive blood test result.  (I think that happened to my family too.)  Even if you have negative blood test results, there is a possibility that you are might be celiac or at least gluten intolerant (or didn't have enough gluten in your blood when you took the test).  I found out it was a false negative after my experience eating gluten.  (See: Gluten Intake Mistake.)  If you feel better after going totally gluten-free, you know you are a self-diagnosed celiac or gluten intolerant.  No doctor (or person) can tell you how you feel, you are the only that knows you feel better.  I sure don't want to eat gluten again.  I KNOW I'm gluten intolerant.

I read at: The Dermatitis Herpetiformis Community: Q's & A's that people with DH might have a false negative blood result.  (Go to the previous link to read more.)

Our children could be celiac but we don't know for sure since no small intestines biopsy was done.  Our son had an elevated IgG and IgA levels and our daughter had an elevated IgG.  I know their bowel movements are a lot better after not eating gluten.  Our son had a round pink face rash on both checks went away after a few days going gluten-free and his bottom cleared up too.  He could very well be celiac having DH, etc. (or gluten intolerant because no biopsy was taken).

My husband
My husband's descendants are from Sweden, England, Scotland, etc.   Sweden has a large number of celiacs.  My husband's brother was diagonsed as celiac in October 2003 and my husband has a lot of the same symptoms as his brother.  (Being super skinny is just one.)

Added 9/30/06
We had a GLUTEN SENSITIVITY GENE TEST done on our two oldest children done at Enterolab.  It was done via swaps (in their mouths).  Our oldest daughter, had one of each gene that "predisposes to gluten sensitivity and celiac sprue".  Our son, has "two copies of a gene that predisposes to gluten sensitivity".  On their site, it states that, "Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe."  We know my husband has a celiac gene and now we know he also has a gluten sensitive gene.  Since both our children have two genes, we both have a gluten sensitive gene and/or celiac gene.  Basically, the Dr. Fine at the Enterolab says if you have one gene, why damage you intestines to find out if you will get it.  Go gluten free.  (That's what my husband and I believed before even having our children tested.)  You can read exactly what the lab says by going to their website.  Also, you can read WHO SHOULD be screened for gluten sensitivity (at their site).  It is amazing who Enterolab states should be tested.  Please go to their site.

Possible Gluten Intake Mistake
My mother-in-law passed away on February 29, 2004 from cancer.  We went up to Washington to go to her funeral. We cooked all our food up there or watched very carefully as the rice flour gravy was being prepared.  We had no reaction up there.  We went to another funeral service up in Snowflake and we ate some of the food at an aunt's home.  We were almost certain that the sausage was fine.  We never eat sausage so this is a first time for us all.  Or, maybe it was cross contamination of gluten flour in the air or someone dropped a piece of bread into the stew we ate or on the plates.  The gravy was prepared with rice flour, chicken broth, and sausage.  I found out later that the sausage was Owen's Sausage.  I called them up and she said, "Our sausage IS NOT GLUTEN FREE".  I called them again on 3/17/04 and talk to someone on the floor and she said: "The monosodium glutamate is extracted from a gluten source".  She did not know what kind.  I know in the United States it is suppose to be fine for celiac to eat it since it usually isn't made from a wheat.  I have read if the MSG is made outside of the United States, you have to be careful.  Some celiacs react to soy and MSG.  (Sources: The Celiac Frequently Asked Questions)  At: The Sprue-Nik Press, it states that: "You should not get a celiac-type reaction from it."

Here are two responses I received from Owen's Sausage via e-mail on 5/3/04:
1.  "We do not claim to have a gluten-free sausage.  The reasoning is because most MSG products are manufactured by using gluten based products.  We can not guarantee that all the MSG that we receive is manufactured from a gluten-free source so we can not make a gluten-free claim with our sausage."
2.  "We buy our MSG from a broker which may purchase some of this product through export.  As a company we have now made the decision to not claim any of our products as gluten-free because of now realizing the sensitivity of people to this ingredient and of the nature of the MSG production."

My Reaction
It had strong abdomen pain for three days and off and on after that (for about 8 days), I went to the bathroom more often than normal and nothing usually came out, I started blelching again (which I had not done for at least a month and this was the first thing that made me wonder about eating gluten), more irritable (My 6 year old daughter wanted to hold my hand but I didn't want her to, I had to initiate it to be comfortable doing it), tired, pink bumps showing up on my back, arms, and hands (which is probably the DH), welts/hives kept on coming and it seemed to stop on 3/18, itchy skin where my legs are healing from the DH, 3/16: a headache most of the day, a canker sore, 3/18/04: a sore on my tongue, I couldn't think straight, drop the keys out of my hands, and a slight burning throat.  I had abdomen pain still on 3/17/04.  I had diarrhea and vomited during the night of 3/18.  I feel much better 3/18 but I couldn't eat much food (like most of the days since I had gluten).

Our Son's Reaction
Our 4 year old son vomited right after eating the sausage gravy over potatoes and eggs, sometime later he got red spots on his bottom (which had gone away after going gluten-free), he threw up again early 3/11/04 morning, he has been crankier than ever and hitting almost all the time (which he usually doesn't do it that much) and can't make his mind up (which is bad enough when he can't decide without the gluten), and he had diarrhea on the morning of 3/17/04.  He must be really hurting and is very irritable and can't handle deciding or being nice to others.  He usually is a good boy most of the times (except when he is hungry).  He had a little bit of diarrhea on 3/18.

My Husband's Reaction
My husband noticed he had a/some canker sore(s) in his mouth.  He said that was the first one since going gluten free.  He is constipated and has to be in the bathroom a lot.   He is tired and gets irritable quicker.

So, make sure the MSG is gluten-free before eating it.  That goes for anything.  We always call companies and stores to make sure what we eat is gluten-free.  We don't want to make the mistake of eating gluten and feeling bad again.

Final Notes

May 24, 2004 and September 14, 2004
My husband and I are glad we ate some gluten because we now know we feel much better being gluten-free.  I know my son and I have benefited from going gluten-free.  It will take my husband awhile to feel better since it seems like his intestines are damaged much more.  We are very choosy (picky) about what we eat or touch.  We call or e-mail companies to verify if something is gluten-free so we don't feel bad for a week or more.  (Go to: GFCF Products for more information.)

Lots of our symptoms have gone away since going gluten-free.  First of all, I have noticed that went away was the patch of bumps I had above my right (most was on that arm) and left elbow went away.  The white (and pink) bumps on my legs went away too.  (I had that as long as I can remember.)   I don't get the big welts on my back anymore.  My stomach aches (well, really intestines) don't happen that often and when it does, it is nothing compared to what I went through when I ate gluten.  I don't get backed up as much and get hardly any migraine headaches anymore.  Secondly, my daughter bowel movements are a lot different now.  When she has a bowel movement, it would be in really large clusters and it was hard for her to have a bm without bleeding.  (My husband and I wondered how they even came out of her body.)  Her bowel movements more often since going gluten-free.  Thirdly, my son's marks on his face hardly shows anymore, his bottom doesn't have red bumps on them, all of the bumps on his back of his legs have disappeared, his bowel movements don't smell as bad and he has bowel movements more often, and he doesn't hit anymore.  (That might of been because he was younger but it might have been caused by eating gluten.)  We have benefited from going gluten-free.  We never were diagoned as celiac but I now some of us (if not all) are celiac.

I'm having fun in my cooking adventures.  Good luck in your gluten-free/wheat-free cooking!


Copyright © 2004-2005 Barbara Pratt.  All rights reserved.