Positive Blood, Negative Scope

[shai76]

I have had life long reflux disease, and food allergies and environemental allergies. My allergist recently diagnosed me as "allergic to everything," which is near the truth. I am allergic to milk, corn, soy, wheat, eggs, oats, yeast, turkey, fish, tree nuts...and probably a few more things I failed to mention. I had a endoscopy and colonoscopy in February. The pre-op diagnosis was a blood test positive for celiac antibodies, but the report of operation states there is no evidence of sprue seen. The GI doc says that I might not have it now, but I might get it in the future. They were kind of like the drive thru gastroenterologist, so I don't get detailed explainations out of them. I'm just wondering if I had celiac disease if that could be the reason why I have so many food allergies? My allergist says he is no GI doctor but what does it matter if I have it or not because I am allergic to wheat anyway, but I tend to think that there might be even more restrictions when it comes to gluten then just not eating wheat, or oats.

How common is it to have positive celiac antibodies, but not actually have the disease?

[ravenwoodglass]

I have had life long reflux disease, and food allergies and environemental allergies. My allergist recently diagnosed me as "allergic to everything," which is near the truth. I am allergic to milk, corn, soy, wheat, eggs, oats, yeast, turkey, fish, tree nuts...and probably a few more things I failed to mention. I had a endoscopy and colonoscopy in February. The pre-op diagnosis was a blood test positive for celiac antibodies, but the report of operation states there is no evidence of sprue seen. The GI doc says that I might not have it now, but I might get it in the future. They were kind of like the drive thru gastroenterologist, so I don't get detailed explainations out of them. I'm just wondering if I had celiac disease if that could be the reason why I have so many food allergies? My allergist says he is no GI doctor but what does it matter if I have it or not because I am allergic to wheat anyway, but I tend to think that there might be even more restrictions when it comes to gluten then just not eating wheat, or oats.

How common is it to have positive celiac antibodies, but not actually have the disease?

You may not be celiac, yet. But you will be if you continue to consume and use this poison. You are however clearly gluten intolerant. You should avoid wheat, rye, barley and oats. There are some people who will not have villi damage for a long time while this poison eats away at the muscles, joints and brain. Many American doctors will blow off preceliac conditions until life is unbearable and their precious biopsies come back postive. You need to read as many postings on the board as you can, especially under related conditions, get as much knowledge as you can and if I were you I would get gluten free ASAP rather than waiting till it gets severe enough that you have permanent problems to your body.

[moonunit]

Hello! One thing I'd recommend is to get a look at the biopsy they sent to the lab. The use of the word "sprue" (which is by some considered a little outdated) might mean that the doctor you saw is not current with information about celiac disease and did not take enough biopsy samples to test accurately.

This happened with my doctor -- the minimum number of samples even by NIH standards is 4-6, with other experts recommending at least 15 (the disease can be very patchy and may not necessarily be doing damage in the location they biopsied). Mine took two samples, probably from the exact same area, and told me that they were "normal" so that's the end of that, no disease. Someone (sorry I don't remember who, or whether it was in a book or on here) used the analogy of trying to biopsy a mole for skin cancer by closing your eyes and picking any random sample of skin, and saying nope, no skin cancer! Not necessarily. Maybe, but not necessarily.

The information you will find on this site is very valuable and for whatever reason, most doctors are not even close to aware it exists! Please try to find out more before you accept the diagnosis at face value. The good news is that a gluten-free diet will probably help you regardless...

[Matilda]

..

[megsylvan2]

They were kind of like the drive thru gastroenterologist, so I don't get detailed explainations out of them.

What a great and accurate description! I do not understand how gastroenterologists (and probably many other specialists too) can expect to do justice to a patient within a 10 minute appointment. So far the ones I've been to have been watching the clock and running for the door as soon as possible. It is very difficult to discuss your condition with them. I feel like I want to tie them to the chair just so I can have a decent conversation with them. In my mind, it would take at least 20-30 minutes for a decent appointment. (Sorry - this is a bit off topic of your post, but I couldn't resist. )

Anyway, welcome! You've come to a good place to learn and receive support. There are many helpful people here and much knowledge and information. I'm still a newbie, and still one of the ones asking the questions too, so I'll leave it to others to answer. But I can tell you that within a few weeks, you will know a whole lot more than your doctor, and should be able to help yourself, even when your doctor can't (or doesn't) help you. So at least you will be on the road to getting your health back. Welcome aboard!

[chrissy]

i have 3 children with celiac---all had positive blood work. one had a negative biopsy, one had an iffy biopsy, and the doc did not biopsy the youngest.

christine

[tiredofdoctors]

The biopsy only represents that there isn't damage to your small intestine -- yet. The positive antibodies (especially if you have Antitranglutaminase and Antiendomysial antibodies) mean that yes, you are positive for Celiac Disease. If you have elevated Antigliadin antibodies, it means that you are gluten intolerant. All of these mean that you have developed an autoimmune disease. Gluten will continue to attack your body -- sometimes in ways that aren't apparent for quite some time. I would encourage you to begin a gluten-free diet, with or without damage to the intestinal villi. If you have the antibodies, you do have the autoimmune disease. The only way to control it, so far, is through a gluten-free lifestyle. Good luck to you . . . Lynne

[shai76]

Hello! One thing I'd recommend is to get a look at the biopsy they sent to the lab. The use of the word "sprue" (which is by some considered a little outdated) might mean that the doctor you saw is not current with information about celiac disease and did not take enough biopsy samples to test accurately.

This happened with my doctor -- the minimum number of samples even by NIH standards is 4-6, with other experts recommending at least 15 (the disease can be very patchy and may not necessarily be doing damage in the location they biopsied). Mine took two samples, probably from the exact same area, and told me that they were "normal" so that's the end of that, no disease. Someone (sorry I don't remember who, or whether it was in a book or on here) used the analogy of trying to biopsy a mole for skin cancer by closing your eyes and picking any random sample of skin, and saying nope, no skin cancer! Not necessarily. Maybe, but not necessarily.

The information you will find on this site is very valuable and for whatever reason, most doctors are not even close to aware it exists! Please try to find out more before you accept the diagnosis at face value. The good news is that a gluten-free diet will probably help you regardless...

Thanks! That explains things a lot for me. I am actually looking over the report of operation right now, and it basically says that they took one sample of my small intestine, one of my esophagus, and one of my colon and no evidence of "sprue" is seen, though I do have a lot of inflammatory cells in my stomach which I read somewhere else could screw up the results. Pre=operative and post-operative diagnosis both state positive celiac antibody, but it doesn't say what kind of antibody. I should probably get a copy of the blood test results too. I've just been wandering if gluten intolerance could be at the base of my multiple food allergies. Maybe if I stopped all forms of gluten I would eventually get over my food allergies.

The problem is I am so allergic to so many things restircting my diet even further just depresses me, but it would be better then this constant belly ache. My food allergies are all class 2 and 3, so I am supposed to completely avoid all those things (wheat, oats, milk,eggs, soy, corn, yeast, turkey, fish, tree nuts). If I even eat a small amount of wheat I have a terrible asthma attack, hives, eczema, as wel as gas and stomach problems. My family doctor originally ordered the scopes to be sure the damage from my food allergies wasn't so bad, and to see if I needed to start steroids or something. But now the doctors say everything is fine, except a hiatal hernia, positive celiac antibodies, gastritis, reflux, esophagitis...they act like these things are no biggy and that I should just learn to live with it. Doctors are, for the most part, so annoying! I love my allergist,a nd my family doctor, but every GI doctor I have been to so far seems like an idiot! Should I worry about my son getting gluten intolerant? He is already seeing a pediatric gastroenterologist for his reflux since birth, and his multiple food allergies.

It's all so over-whelming.

[Janie Beast]

My allergist told me NOT to get the biopsy done, because it is so inaccurate. She said unless they hit the exact sites it can show no celiac problems. She wanted me to get some other test that insurance won't cover. You mail fecal sample in for test, which evidently is much cheaper. Not being fond of playing with feces, I asked her what else can I do? She said I'd tested positive on one of the three blood tests. She said she was almost positive that I had it, she really hammered away at this. So I am just trying the diet for a while and things are improving somewhat. I gather it takes a long time to find foods you like.

[shai76]

Thanks for the reply!

I'm going gluten free completey the past couple days. It's not that big of a change since I am allergic to wheat and oats anyway. But I have had a stomach ache the past fee days, really bad. It feels like someone punched me above my belly button,and my stomach swells up like I am pregnant any time I eat. It sucks.

I'm really hoping if I stay gluten free that my food allergies might go away, at least some of them. I would love to be able to enjoy a chunk of cheese again.

[Ursa Major]

Hi Shai, I am probably intolerant to at least as many things as you are, probably more, and I manage! Most of the time I feel so much better when I stay on my own special diet. All your symptoms sound like you have celiac disease. And you're right, if you stay on the gluten free diet, some of your allergies might go away........but it could take a year for that to happen.

And when babies already have reflux, and he's got a mother with probable celiac disease (which is genetic), I strongly suspect that he is gluten intolerant, too. Take him off all gluten and dairy (most celiacs can't tolerate dairy either, at least not until the intestines have healed, and then some can have it again), and see if his reflux improves! I bet it will.

[lonewolf]

(wheat, oats, milk,eggs, soy, corn, yeast, turkey, fish, tree nuts).

Welcome to the board! I hope we can help you out. Lots of people here have multiple food intolerances/allergies, so you're in the right place.

If you've been avoiding all of these things, then you'll do fine with gluten-free. It's not much more of a change. It's all the "other" things that make it difficult. When I first found out I had food allergies I could only eat fish, rice some fruits, some vegetables, sunflower seeds and cashews. Now, I "only" have to avoid gluten, dairy (but can get away with small amounts of butter and raw goat cheese), eggs and soy. Going completely gluten-free, rather than just wheat-free has made a huge difference for me in terms of stomach aches, bloating and cramping.

Can you eat chicken, other meats, rice, potatoes, tapioca, fruit, vegetables and seeds? If so, you'll be able to get a lot of recipes from people here - many are already posted in the recipes section. Let us know what you like to eat and I'm sure you'll get lots of help.

[shai76]

Hi Shai, I am probably intolerant to at least as many things as you are, probably more, and I manage! Most of the time I feel so much better when I stay on my own special diet. All your symptoms sound like you have celiac disease. And you're right, if you stay on the gluten free diet, some of your allergies might go away........but it could take a year for that to happen.

And when babies already have reflux, and he's got a mother with probable celiac disease (which is genetic), I strongly suspect that he is gluten intolerant, too. Take him off all gluten and dairy (most celiacs can't tolerate dairy either, at least not until the intestines have healed, and then some can have it again), and see if his reflux improves! I bet it will.

Thanks Ursula

My son is almost 2 and has had reflux since birth, and multiple food allergies, just like me...lucky him.

He doesn't eat wheat because he has allergic type reactions from it, and he has already shown allergic reactions to milk and soy and corn, so he is on a "hypo-allergenic" diet, and he takes prilosec twice a day (just like me). I love for us both to be off the medicine some day. I noticed that the prilosec wasn't working so well for me before. Then I went off the gluten completely and now I have no reflux, but I am still on the medication.

It's just confusing because almost 2 years aog, after having my son, I had terrible problems and developed more allergies. I was tested and the doctor tol dme I was gluten intolerant. Then a half a year later a different doctor told me I wasn't, now a GI doc says I am but I am not. Why can't they just make up their minds?

Welcome to the board! I hope we can help you out. Lots of people here have multiple food intolerances/allergies, so you're in the right place.

If you've been avoiding all of these things, then you'll do fine with gluten-free. It's not much more of a change. It's all the "other" things that make it difficult. When I first found out I had food allergies I could only eat fish, rice some fruits, some vegetables, sunflower seeds and cashews. Now, I "only" have to avoid gluten, dairy (but can get away with small amounts of butter and raw goat cheese), eggs and soy. Going completely gluten-free, rather than just wheat-free has made a huge difference for me in terms of stomach aches, bloating and cramping.

Can you eat chicken, other meats, rice, potatoes, tapioca, fruit, vegetables and seeds? If so, you'll be able to get a lot of recipes from people here - many are already posted in the recipes section. Let us know what you like to eat and I'm sure you'll get lots of help.

The only meats I can't eat every day are fish and turkey because I had class 1 allergies to them I can eat them occassionally. I would to learn to bake with rice flour, so I definitly will check out the recipes. I can't eat yeast, sot hat causes a big problem sometimes too. I'm pretty allergic to yeasts and molds. :/