Confused - Celiac Disease Or Sensitivity Or Intolerance

[DogWalkerNYC]

Hi, I'm so glad I found this forum. I'm so confused. I'm 64 years old and the owner of a very active, stressful small business. Two years ago I was told I have mild gerd that Prilosec completely controlled, as long as I didn't eat too much, or too late, or the wrong foods.

About 5 months ago I started working on my website in the evenings and as I worked I would usually snack on a buttered roll and coffee. Shortly after this routine started I began feeling very bloated after eating the roll and the feeling lasted well into the next day. Not sure what this meant I searched the Internet and learned about gluten intolerance and Celiac Disease. The more I read the more I realized that I had many other symptoms of gluten intolerance that I hadn't realized were just that. I made lists of 'Acceptable' foods and 'Non-Acceptable' foods and went shopping. Within several days of eating gluten-free, 3 main symptoms reversed: the bloating, my post-nasal drip, and I could breathe deeper than I remember being able to breathe, like someone opened a valve in my chest.

But the stress from my business got the best of me and I was not true to the diet. I developed a ridiculously itchy right arm (top of arm from wrist to elbow) about a month ago, then came the hives about a week ago. I also developed hives on my left arm, same area, and the back of my neck. Out of sheer frustration I decided to try an allergen elimination diet yesterday, and according to my research fresh fruit was allowed. So I stocked up on organic blueberries and strawberries, among the other recommended foods.

This morning I ate 4 delicious, juicy, organic strawberries and promptly broke out in hives again. Disillusioned and confused I did a google search for 'strawberries and hives' only to discover that strawberries are grown in straw, and straw is made from wheat, rye, barley or oats, all no-no's on a gluten-free diet.

Why are strawberries listed as OK foods on so many gluten-free websites if they are grown in a fashion that renders them gluten-FULL instead of gluten-FREE? Why is there no disclaimer about strawberries on the gluten-free websites that tell you to eat fresh fruit?

I am also confused by the terms Celiac Disease, gluten sensitivity and gluten intolerance. Most websites say there is a difference in the meaning of these three terms, yet on the home page of this website (www.celiac.com) it says: 'Celiac disease, also known as gluten intolerance, is a genetic disorder that affects at least 1 in 133 Americans.'

Help!! And thank you.

[Razzle Dazzle Brazell]

Hi, I'm so glad I found this forum. I'm so confused. I'm 64 years old and the owner of a very active, stressful small business. Two years ago I was told I have mild gerd that Prilosec completely controlled, as long as I didn't eat too much, or too late, or the wrong foods.

About 5 months ago I started working on my website in the evenings and as I worked I would usually snack on a buttered roll and coffee. Shortly after this routine started I began feeling very bloated after eating the roll and the feeling lasted well into the next day. Not sure what this meant I searched the Internet and learned about gluten intolerance and Celiac Disease. The more I read the more I realized that I had many other symptoms of gluten intolerance that I hadn't realized were just that. I made lists of 'Acceptable' foods and 'Non-Acceptable' foods and went shopping. Within several days of eating gluten-free, 3 main symptoms reversed: the bloating, my post-nasal drip, and I could breathe deeper than I remember being able to breathe, like someone opened a valve in my chest.

But the stress from my business got the best of me and I was not true to the diet. I developed a ridiculously itchy right arm (top of arm from wrist to elbow) about a month ago, then came the hives about a week ago. I also developed hives on my left arm, same area, and the back of my neck. Out of sheer frustration I decided to try an allergen elimination diet yesterday, and according to my research fresh fruit was allowed. So I stocked up on organic blueberries and strawberries, among the other recommended foods.

This morning I ate 4 delicious, juicy, organic strawberries and promptly broke out in hives again. Disillusioned and confused I did a google search for 'strawberries and hives' only to discover that strawberries are grown in straw, and straw is made from wheat, rye, barley or oats, all no-no's on a gluten-free diet.

Why are strawberries listed as OK foods on so many gluten-free websites if they are grown in a fashion that renders them gluten-FULL instead of gluten-FREE? Why is there no disclaimer about strawberries on the gluten-free websites that tell you to eat fresh fruit?

I am also confused by the terms Celiac Disease, gluten sensitivity and gluten intolerance. Most websites say there is a difference in the meaning of these three terms, yet on the home page of this website (www.celiac.com) it says: 'Celiac disease, also known as gluten intolerance, is a genetic disorder that affects at least 1 in 133 Americans.'

Help!! And thank you.

Unfortunately only ingredients are required to be listed on food labels and is probably the reason they are posted as gluten free food option. IMO this is a huge problem for all gluten-free eaters. This is why it is important to learn about how food is processed naturally and in factories and so on.

Celiac disease Is known as gluten intolerance very commonly still but they are definitely not the same so don't doubt it.While they can have many similar symptoms and effect on the body, they are distinguished by the fact that celiac is an autoimmune reaction. That autoimmune reaction causes damage to the cilia in the intestines. This damage may be missed sometimes through scope and biopsy as it may not exist in the entire digestive tract. Gluten sensitivity I believe can affect the immune system but is not an autoimmune reaction. All of these, however, can cause malabsorption of nutrients and severely impact health in many levels. I hope that clears it up a little bit. The knowledge we have is still a little sketchy on gluten sensitivity. There is some basics, welcome to the forum.

[Skylark]

As Razzle said, celiac is autoimmune and there are blood tests you should have gotten while you were still eating gluten. Without testing there is no way to distinguish celiac and gluten intolerance, though an itchy, blistered skin rash is often an autoimmune rash called dermatitis herpetiformis (DH). If you have DH you're celiac because it's autoimmune.

Strawberries are safe. There isn't enough CC from the straw to bother anyone but the most sensitive celiacs, particularly if you rinse them. That level of sensitivity is extremely rare. BUT strawberry allergy is not at all uncommon and the usual symptom is hives. It sounds like you are dealing with more than one food reaction. I think you need to see if you can get your blistered rash biopsied to test for DH (and therefore celiac) and get some allergy testing.

[DogWalkerNYC]

Thanks for the info. I'm self-diagnosed and won't go back on gluten to be tested. I'm seeing my doctor in August for standard yearly tests. I'd rather stay away from gluten and walk in to his office feeling great then to go back on gluten and be sick for the next 6 weeks. I'm almost embarrassed to say this, but the hives might not be food-related at all. I own a pet care company in Manhattan and do a lot of dog boarding. I'm constantly being licked on my hands and arms and this morning I realized that one of my own dogs loves to lick my arms at the end of the day. It's 90 degrees here in New York and he must love the salt on my skin. OMG, I could be allergic to dog saliva!! It's a common allergen, something about the protein in their saliva. I'm taking one Zertyk a day and using Benadryl antihistamine cream on my arms. The hives are still there but much smaller and much less itchy. I'm keeping the dogs away from my arms and I'm anxious to see what happens over the next few days.

[Skylark]

No need to be embarrassed. That was a good catch! Isn't it a great feeling when you figure out a mystery allergy? The gluten-free diet can get you so food-focused that you blame everything on gluten, or on food in general.

I hope you continue to feel a lot better off gluten.

[Takala]

More likely that you are allergic to what the dogs have been eating.

I went from being so- called "allergic" to dogs to being able to having dogs in the house, once I cleaned up my diet. But this coincided with something else. What I noticed back in the late eighties/early nineties is that when they started changing dog food kibble to include soy and sometimes wheat, a lot of dogs started having allergies to certain brands, including mine. I would talk to other people about what their dogs were doing, and I had several tell me it was like a miracle that they got their dog's itching under control, their dog's hair coat grew back, and their "mange" cured by stopping feeding them famous name "Brand X" dog food- and going with this cheaper stuff that didn't have the bad ingredients. I have had several dogs go soy-less with good results, but it never occurred to me at that time that I myself should try wheatless as I was a slower learner.

Fast forward to a few years ago, and we had adopted at different times 2 unrelated, large, long haired dogs of the same half-breed, who both turned out to be allergic to wheat, barley, and oats big time. The one dog passed from a seizure after 4 years, but we still have the other one, who is extremely sensitive. In order to keep him from getting cross contaminated, we banned gluten products from animal feeds around here in addition to pet foods and pet treats. (he is big enough to drink out of a horse's water tank, in addition to the cat drinks out of his water bowl, so there was a lot of unintentional sharing going on. And we also have a soy-allergic horse.)

I am a rather fanatical reader of pet food/treat labels, and it is surprising how many are really bad in the gluten department, including a LOT of brands that proclaim "gluten free" on the label, and yet have barley or even other wheat derivatives, as if we are all idiots out here in Consumer Land. Pet "treats" are horribly mislabeled many times. I have talked to Pet Food Manufacturer's reps about this and they honestly Do Not "Get It" that gluten is the word for proteins in the triticum family and not just what they are calling it this week. It is also a sort of Wild Wild West in the American USA in regards to pet food labeling, as the manufacturers can change ingredients without having to immediately re- label.

I am mentioning this as a possibility to look into. I understand the difference between allergies and intolerances and auto immune reactions, but the outcome is going to be the same- avoiding whatever food or ingredient is causing the reaction, however it is getting spread from box to human to pet.

And dogs love rice cakes and plain corn tortilla pieces as "treats."

[Razzle Dazzle Brazell]

I agree with Skylark, if you wash your veggies and fruits and things off, you should be safe even if you are a supersensitive. Sometimes you have to do a lot of trial and error to figure out what is safe for you and what is not. For example I caved in last night and ate some simple burgers my mother cooked in a scratched "nonstick" pan and it made me sick. That was dumb but since I have come off of gluten, I am even more sensitive than I was before. Darn! I was doing so much better too. I said all that to say you just kinda have to figure out what is necessary for your own health.

[Kamma]

I read a recent interview with Fassano who said that there was evidence that the gluten sensitivity/reaction was based on the "innate immune system". I'll try and see if I can come up with the interview..

Here you go:

""We're talking about 20 million people out there," he says. "This gives some rational reason why people come up with the symptoms they have."

People with celiac disease have specific damage to their intestines caused by an autoimmune reaction to gluten in their diets. People with gluten sensitivity don't have this damage, although they do experience inflammation from gluten, Dr. Fasano says.

The difference between the two conditions stems from the immune system response to gluten.

In gluten sensitivity, the innate immune system -- the body's first line of defense against invaders -- responds to gluten ingestion by fighting the gluten directly, creating inflammation both inside and outside the digestive system, Dr. Fasano says.

Meanwhile, in celiac disease, both the innate immune system and the adaptive immune system -- a more advanced, sophisticated part of the immune system -- get involved in the fight, he says. Miscommunications between adaptive immune system cells lead those cells to fight the body's own tissues, creating the villous atrophy seen in celiac disease."

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