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TammyK

The Popular Question...

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This really does seem to be the most common question on this forum, "am I celiac or gluten intolerant"? I struggle with the same question for my daughter. She did, however, have skin testing done by an allergist and had HUGE welts on her back for wheat, trees, grasses, cats, dogs, and dust mites. These indicate allergy and are what induces her Asthma. So my question now is, when a kid is "allergic" would it be most likely gluten intolerance rather than celiac? She has recently started seizing and migraine headaches which both demand a gluten-free diet.

I understand everyone's desire to know the difference.


~ TammyK ~ Learning so much from this forum! (Thank You)

11 yr. old daughter

Asthma, Allergies to wheat, dog, cat, trees, grass, pollen, dust mites, dx 2004

Onset of seizures & migraines caused by gluten, 5/08

Focusing every day to stay seizure free without meds

39 yr. old mother:

Hypothyroid dx 2004 after battling it for way too long

Adrenal Insufficiency dx 2004

Multiple Miscarriages

Infertility for 11 yrs. now

Rashy & itchy caused by wheat, oats and eggs. Gassy too.

Both of us are currently gluten-free, caseine-free, soy-free & MSG-free.

3 older siblings & 1 loving husband: eating healthier because of us :)

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Celiac is not an allergy it's a genetic disease. That's my understanding anyway.


Celiac Dx 6/16/08 with blood work done for chronic anemia.

Endoscopy & biopsy 6/25/08 - complete villious atrophy.

Vitamin D deficency - 50,000iu Vit D weekly started 8/4/08.

Iron Deficency Anemia - IV Iron infusions weekly started 8/7/08.

Osteopenia of spine 8/12/08 calcium supplements commenced.

DD aged 11yrs Celiac Dx 7/8/08, symptom free except for being short for age.

DS aged 4yrs Allergic to corn & oats but bloods & biopsies negative for Celiac 2/2007, GERD 5/2005, Cardiac surgery for retro-esophageal right sub-clavian artery 5/5/2005.

DD aged 2 yrs Bloods negative for Celiac.

Gluten Free life started 7/15/08

My Mum tested positive for celiac disease 7/25/08

My maternal great-grandfather died from "his stomach wearing away" he was a baker.

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On Oprah yesterday, Christiane Northrup (OBGYN, author of books on women's health issues), said that one in four women suffer from a gluten sensitivity. She deals with women's issues, so she didn't say whether or not those same numbers existed for men, or whatever. Also, I don't know where she got those numbers. But, if she's right, that's 25% of the population suffer from a gluten intolerance! The current celiac numbers are for just under 1%. So maybe out of those 25% affected by gluten, a much smaller number of people develop the ultimate gluten intolerance - celiac. Celiac can at least be diagnosed because it shows true and serious (and specific) damage - and can be deadly. For the rest of the 25%, they have true problems and symptoms and illness - but no tell-tale antibodies or specific mucosal damage. So, just think of that! Out of every 25 of us who get on this site with gluten-related symptoms - maybe one of us will have an actual diagnosis of celiac (if we're lucky enough to get a doctor to take us seriously and test it - and if they test in the right spot).

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This really does seem to be the most common question on this forum, "am I celiac or gluten intolerant"? I struggle with the same question for my daughter. She did, however, have skin testing done by an allergist and had HUGE welts on her back for wheat, trees, grasses, cats, dogs, and dust mites. These indicate allergy and are what induces her Asthma. So my question now is, when a kid is "allergic" would it be most likely gluten intolerance rather than celiac? She has recently started seizing and migraine headaches which both demand a gluten-free diet.

I understand everyone's desire to know the difference.

Hi, TammyK! I can offer a little more information for you. When your daughter had the skin testing, the allergist exposed her back to very small amounts of the allergens (wheat, trees, grasses, etc.). The welts showed that her body makes a certain antibody called IgE when it "sees" the allergen. The IgE starts a cascade of chemical changes including a release of histamine and other changes that cause fluid and immune cells to rush to the rescue to clear out the allergen. In the allergy testing, that shows up as a red itchy welt. Allergy medicines that contain antihistamines are stopping that cascade effect and so prevent the allergy symptoms.

Celiac patients have certain genes that predispose us to a different kind of immune response that you can think of as triggered by gluten. No gluten, no response. When our bodies "see" gluten, our immune systems make a different antibody called IgA (and maybe IgM, I think, but I'm not clear on that part of it). IgA doesn't cause the same type of response with a histamine release and the other changes that you saw in the welts of allergy testing. That's why celiac disease is called an autoimmune and a genetic disease and isn't an allergy. I haven't yet read a good description for what is happening after the IgA is produced to cause the intestinal damage and the DH skin response some people see. It may be that the science is just not clear yet.

Your daughter's wheat allergy would indicate she needs at least a wheat-free diet. I don't know if that also means she would respond best on a gluten-free diet, meaning no rye, barley, or oats either. Because she's having the neurological symptoms, too, it certainly wouldn't hurt her to be extra careful.

Good luck to you. I hope she starts to feel better soon.

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A wheat allergy has nothing to do with celiac/gluten intolerance. They are different reactions. Your daughter is obviously allergic; she may also be celiac or gluten intolerant.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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It is possible to have a wheat allergy and be gluten intolerant & or have celiac disease.

I am gluten intolerant with two DQ1 genes, but I have also been allergic to barley & oats for the past 40 years. I might also be allergic to wheat but have not been tested lately.

I know it is a genetic problem, because I can trace it back in my family for many years (Irish & English) & forward with all the grandchildren... I was born with it, my son was born with it & his son was born with it.

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Your daughter's wheat allergy would indicate she needs at least a wheat-free diet. I don't know if that also means she would respond best on a gluten-free diet, meaning no rye, barley, or oats either. Because she's having the neurological symptoms, too, it certainly wouldn't hurt her to be extra careful.

To Sealiac and Everyone Else,

Thank you for your replies. With the combo of each one, they all help. I appreciate all the wonderful people who take the time to respond to questions on this forum. They have been a significant help here in my home in taking care of my daughter! Know that you are making a differnce in people's lives that are dealing with tough issues.

I had switched my daughter over to Spelt once I learned of the wheat allergy. This seemed to work for 5 or so years until she started having seizures and migraine headaches. Gluten free is definitely the answer for her. She was having 5-6 episodes a day and they have deminished to 1 or so every week or two. Usually, I can pin-point a food or preservative and/or additive. So now I am just trying to use good old fashioned logic to figure out if it is Celiac OR gluten intolerance that is causing the seizures. Sounds like I CAN'T assume that since she is "allergic" that it isn't celiac. It would seem that with one individual, that all symptoms would be related. When a person is allergic , then isn't that the leaky gut thing????? Leaky gut = gluten intolerance? That was my logic. If Celiac is behind this, then I would need to know that. I know that there is strong evidence saying that Celaic Disease and Seizures are connected. But what about allergies and Celiac. Allergies have been a major issue with her.

Would love to hear from more of you!!!!!


~ TammyK ~ Learning so much from this forum! (Thank You)

11 yr. old daughter

Asthma, Allergies to wheat, dog, cat, trees, grass, pollen, dust mites, dx 2004

Onset of seizures & migraines caused by gluten, 5/08

Focusing every day to stay seizure free without meds

39 yr. old mother:

Hypothyroid dx 2004 after battling it for way too long

Adrenal Insufficiency dx 2004

Multiple Miscarriages

Infertility for 11 yrs. now

Rashy & itchy caused by wheat, oats and eggs. Gassy too.

Both of us are currently gluten-free, caseine-free, soy-free & MSG-free.

3 older siblings & 1 loving husband: eating healthier because of us :)

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It is possible to have a wheat allergy and be gluten intolerant & or have celiac disease.

I am gluten intolerant with two DQ1 genes, but I have also been allergic to barley & oats for the past 40 years. I might also be allergic to wheat but have not been tested lately.

I know it is a genetic problem, because I can trace it back in my family for many years (Irish & English) & forward with all the grandchildren... I was born with it, my son was born with it & his son was born with it.

gfpaperdoll,

What is DQ1 genes? Are you saying that you are gluten intolerant yet have Celiac genes? If a person has Celiac gene(s), does that mean that person is Celiac? (Can a person have the gene but not be Celiac)? Guess I didn't quiet understand your post. You didn't specifically say you are celaic or not.

I'm considering gene testing for a diagnosis but want to understand it first; is it reliable way to go about it? She has the symptoms but tested negative on bloodwork (on the gluten-free diet at the time).

Thanks for explaining. . .

Love hearing from the experts....


~ TammyK ~ Learning so much from this forum! (Thank You)

11 yr. old daughter

Asthma, Allergies to wheat, dog, cat, trees, grass, pollen, dust mites, dx 2004

Onset of seizures & migraines caused by gluten, 5/08

Focusing every day to stay seizure free without meds

39 yr. old mother:

Hypothyroid dx 2004 after battling it for way too long

Adrenal Insufficiency dx 2004

Multiple Miscarriages

Infertility for 11 yrs. now

Rashy & itchy caused by wheat, oats and eggs. Gassy too.

Both of us are currently gluten-free, caseine-free, soy-free & MSG-free.

3 older siblings & 1 loving husband: eating healthier because of us :)

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My son has both a wheat allergy (confirmed with a bloodtest) and Celiac Disease (confirmed with a bloodtest and biopsy), so it is possible to have both.


Amy

1989: I am diagnosed with IBS.

3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.

6/08: My Celiac test is negative.

7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!

7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.

8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

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About the gene question: It's possible to have celiac genes but to not have celiac. About 30% of the American population has celiac genes if I recall correctly, but only some people develop celiac. Celiac requires something else to "trigger" it, how exactly that happens is not quite well known as far as I know. Basically you need to have the genetic disposition + a trigger that activates the genes + you need to be eating gluten, to get celiac disease.

In short, a gene test won't really tell you that much I'm afraid.

Pauliina

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So how is she diagnosed with celiac? Are you doing a self-diagnosis due to her spelt reaction? Spelt is a distant/ancient form of wheat that is usually ok for wheat-allergic people, but maybe she is allergic to both. Does she have problems with rye or barley?


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Just to add 5 more cents . .. the celiac gene says you could have celiac. however, you can have the genes and have lots of negative reactions to gluten, but if your body hasnt gone so far as to destroy parts of your intestinal tract, you dont have celiac. However, if you keep eating gluten, you could eventually develop full blown celiac, esp if there is some stressfull trigger in your life, physical or emotional.

I have allergies to wheat, barley, malt and yeast . . . but my gluten symptoms sound more like celiac than like allergy - stomach mess, headaches, depression, anxiety and yeast infections. My celiac panel was negative, but i'd already been gluten-free for several weeks, so that makes the test not totally accurate.

Obviously, your daughter needs to avoid wheat and spelt. You could always test her on barley and rye . .. or you could just follow all the suggestions here for a totally gluten-free diet. When I realized my problems were more likely allergy than celiac, i considered leaving the list, but was encouraged to stay, since we are all basically struggling with the same thing . .. learning to live without eating any gluten. After all, the majority of glutening comes from wheat (or barley, which i'm also allergic to).

Oh, one more thing. Leaky gut. This can be caused by yeast infections, celiac disease (or pre-celiac gluten intolerance) and a few other things. Leaky gut can cause people to develop more allergies and intolerances. It is totally seperate from allergies and celiac - in that you can have any one or all three . . .

good luck getting your daughter healthy!


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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So how is she diagnosed with celiac? Are you doing a self-diagnosis due to her spelt reaction? Spelt is a distant/ancient form of wheat that is usually ok for wheat-allergic people, but maybe she is allergic to both. Does she have problems with rye or barley?

kbtoyssni,

My daughter had a negative blood test after being off gluten for 2 or so weeks. I don't if I am trying to self-diagnosis as much as I'm trying to figure out my next step. I want to know if she is Celiac yet do have her symptoms mostly under control. (I want to know how to face the next 8 or so years with her and prepare her to care for herself). She occassionally gets glutened and I have to rack my brain to find the trigger. Thank God for this forum; it is pointing me to many sources I would have not otherwise considered. Like yesterday, I realized she had toasted her gluten-free bread in a glutened toaster oven. If I had not read it on the forum, it would have never been considered. (She had a seizure that morning).

I thought spelt was okay for her. I took her off wheat to control her Asthma but at some point it stopped working. Last Fall her Asthma got way out of control and we had to go back to meds. I'm trying to make some logical conclusions and sense out of it. I have been waiting to see doctors; appts. have been 5 or so weeks out each time. Basically, it is driving me nuts not knowing if it is an allergic thing or celiac. I don't think it is quiet time to know yet in the medical process. Doctor haven't even dx that she has seizure activity. Waiting for the 24 hr, Video Monitoring & EEG appt. This is all taking weeks!

I have no idea regarding rye and barley. I never cook with either. That would be a great idea to test though, eh? I don't think an allergic response would be seizing though. ??????? Seems like seizing is tied to gluten, by which she would likley respond anyway. People report the two go together.

Thank you for your post!!!! Me thinks this will take eons to figure out. Any more thoughts for me?


~ TammyK ~ Learning so much from this forum! (Thank You)

11 yr. old daughter

Asthma, Allergies to wheat, dog, cat, trees, grass, pollen, dust mites, dx 2004

Onset of seizures & migraines caused by gluten, 5/08

Focusing every day to stay seizure free without meds

39 yr. old mother:

Hypothyroid dx 2004 after battling it for way too long

Adrenal Insufficiency dx 2004

Multiple Miscarriages

Infertility for 11 yrs. now

Rashy & itchy caused by wheat, oats and eggs. Gassy too.

Both of us are currently gluten-free, caseine-free, soy-free & MSG-free.

3 older siblings & 1 loving husband: eating healthier because of us :)

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Oh, one more thing. Leaky gut. This can be caused by yeast infections, celiac disease (or pre-celiac gluten intolerance) and a few other things. Leaky gut can cause people to develop more allergies and intolerances. It is totally seperate from allergies and celiac - in that you can have any one or all three . . .

dbmamaz,

I thought that leaky gut and allergies are connected; that because the intestinal walls have been comprimised (holes), that food particles, namely the proteins, are able to travel through and make it into the blood stream. Then, this calls the immune system into action, it seeing the food as a foreign substance which then causing it to release antihistimine to deal with it. Therefore, the allergic reaction. Is my understanding correct?

My daughter has only one other food intolerance that I know of.


~ TammyK ~ Learning so much from this forum! (Thank You)

11 yr. old daughter

Asthma, Allergies to wheat, dog, cat, trees, grass, pollen, dust mites, dx 2004

Onset of seizures & migraines caused by gluten, 5/08

Focusing every day to stay seizure free without meds

39 yr. old mother:

Hypothyroid dx 2004 after battling it for way too long

Adrenal Insufficiency dx 2004

Multiple Miscarriages

Infertility for 11 yrs. now

Rashy & itchy caused by wheat, oats and eggs. Gassy too.

Both of us are currently gluten-free, caseine-free, soy-free & MSG-free.

3 older siblings & 1 loving husband: eating healthier because of us :)

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dbmamaz,

I thought that leaky gut and allergies are connected; that because the intestinal walls have been comprimised (holes), that food particles, namely the proteins, are able to travel through and make it into the blood stream. Then, this calls the immune system into action, it seeing the food as a foreign substance which then causing it to release antihistimine to deal with it. Therefore, the allergic reaction. Is my understanding correct?

My daughter has only one other food intolerance that I know of.

I am pretty sure you can have allergies without leaky gut. after all, hayfever is an allergy. Some allergies seem to be inborn - you can be allergic to foods you've never eaten. Leaky gut starts to be a suspect if you have a large number of allergies, or if the allergies are increasing. THats my understanding, at least.


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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