''celiac And Doesn't Need A Biopsy'' Told Me 2 Doctors! Help Me!

[Shallyssa]

Hi,

First I have to tell you that I'm french (from NB, Canada) and I'm not really good to write in English! Sorry!

My father was diagnose with celiac disease about 5 years ago, he think he had the biopsy..not even sure!! He's not following the diet anymore....!!!!

I asked my doctor to check me for celiac disease in October 2007. The only symptoms I had was headaches, bloating, nausea, indigestion.. No diarrhea, no weigh loss, no malnutrition. The blood test came positifs only for IgA... I ask for a biopsy..she said I didn't need one since my father also have celiac disease! I had just receive my degree in Sciences Nutrition but they didn't teach us a lot about celiac disease...so I trusted my doctor!

After I had seen here I started the gluten-free diet but I didn't see any changes..maybe I was feeling a little better but nothing miraculous!!! Few months later I asked another doctor about the biopsy..she said the same thing..doesn't need one! Now it's be a 1 years and 4 months on the gluten-free diet and I still have bloating and headaches. I told my doctor last week to give me a appointment with a gastroenterologist ..which can take few month!! ...now I'm waiting to see him! I want to do a gluten challenge...I really want to have the biopsy cause I don't feel confident with only the blood test!

Is it possible to be IgA positifs for other disease? Is false positives happens with IgA blood tests results? I have see on the internet that an IgA result less then 34 is ok... less then 34 what? What's a normal IgA blood tests??

I really need help about this...I don't know anymore if I have to eat normal of continue following my gluten-free diet! I ate some gluten 2 weeks ago for the first time since my ''diagnosis'' ...nothing happen but I know some people feels anything even thought their intestines is damages.

I'm sure you understand how I feel right now...Please talk to me about this.. .I just don't know what to do anymore and my degree in Sciences nutrition surely didn't teach me anything about celiac disease!!!!

Julie

[RiceGuy]

Well, my first thought is dairy. Many here have found that they do not improve without also eliminating dairy. Sometimes other things like soy and corn are problematic too. You may need to try avoiding other top allergens to see improvements.

However, you may also need to look over your foods, skin/hair care products, and even pet food, to make sure you aren't getting glutened.

[Gemini]

Hi,

First I have to tell you that I'm french (from NB, Canada) and I'm not really good to write in English! Sorry!

My father was diagnose with celiac disease about 5 years ago, he think he had the biopsy..not even sure!! He's not following the diet anymore....!!!!

I asked my doctor to check me for celiac disease in October 2007. The only symptoms I had was headaches, bloating, nausea, indigestion.. No diarrhea, no weigh loss, no malnutrition. The blood test came positifs only for IgA... I ask for a biopsy..she said I didn't need one since my father also have celiac disease! I had just receive my degree in Sciences Nutrition but they didn't teach us a lot about celiac disease...so I trusted my doctor!

After I had seen here I started the gluten-free diet but I didn't see any changes..maybe I was feeling a little better but nothing miraculous!!! Few months later I asked another doctor about the biopsy..she said the same thing..doesn't need one! Now it's be a 1 years and 4 months on the gluten-free diet and I still have bloating and headaches. I told my doctor last week to give me a appointment with a gastroenterologist ..which can take few month!! ...now I'm waiting to see him! I want to do a gluten challenge...I really want to have the biopsy cause I don't feel confident with only the blood test!

Is it possible to be IgA positifs for other disease? Is false positives happens with IgA blood tests results? I have see on the internet that an IgA result less then 34 is ok... less then 34 what? What's a normal IgA blood tests??

I really need help about this...I don't know anymore if I have to eat normal of continue following my gluten-free diet! I ate some gluten 2 weeks ago for the first time since my ''diagnosis'' ...nothing happen but I know some people feels anything even thought their intestines is damages.

I'm sure you understand how I feel right now...Please talk to me about this.. .I just don't know what to do anymore and my degree in Sciences nutrition surely didn't teach me anything about celiac disease!!!!

Julie

Bonjour, Julie......your written English is fine! You have made your point well and many here will understand what you are going through. You are going to have a problem because you have socialized medicine in Canada and they are always trying to save money. It is harder to have testing there but do not give up and be pushy about it to the doctor. Unfortunately, it looks like the States may adopt this type of medical system also so we will have the same problems as you do getting to see doctors.

I can understand them giving you a diagnosis without the biopsy if your father is a diagnosed Celiac....makes sense. But if you did not have a really good dietary response, it could very well be what RiceGuy stated....you may have an additional intolerance to another food and dairy is huge. I cannot tolerate too much dairy at all, along with having Celiac. I would suggest going to the GI doctor for testing, as you are planning on. Keep eating gluten, if you can stand it, for testing. That is very important!

As for the IgA test, if you had a positive, it means something is going on. It is common to have a false negative on the test, not a false positive. I am not sure if there are other diseases that are diagnosed with elevated IgA levels so cannot give you an answer on that one......sorry. I would doubt it though but am not a doctor. Labs have different ranges for negative and positive so you would have to look at your test to see what the normal range is. It can vary from lab to lab.

Remember that a negative biopsy also does not mean you do not have celiac disease. Damage can be patchy and can take years for it to get bad enough for a doctor to find it on the test. This is why it takes on average, 11 years in the States to get an official diagnosis. The medical profession needs to do a better job with the testing part.

Good luck and keep us posted on how you do or if you have any other questions!

[Fiddle-Faddle]

If you get a biopsy at this point, it will be totally worthless if you have been gluten-free for so long.

And I can understand why they would think that you wouldn't need a biopsy if you have a positive IgA and a celiac father. That's actually VERY forward-thinking of your doctor.

However, you have not had a positive result with the gluten-free diet.

THere are several possibilities:

1) You might not be as gluten-free as you think. (Sorry, but most of us here thought we were gluten-free at first, and then found all kinds of "hidden" gluten, in things like rotisserie chicken, soy sauce, "lite" ice creams, deli tuna salad, most mainstream cereals, etc. In addition, a lot of health food store owners are totally misinformed, and tell you that thinks like spelt and kamut are gluten-free, and they're NOT! They're just different forms of wheat.)

2) You might have an additional food intolerance, like dairy, soy, or corn. If you are intolerant to dairy, then your villi would not heal until you eliminate dairy. The funny thing is, sometimes you might be intolerant to dairy because the intestinal villi are damaged from gluten, and therefore don't produce the necessary enzyme to digest the dairy. But the continued eating of dairy prevents the villi from healing even though the original damage was from gluten, not dairy.

3) You might have something entirely different going on, such as a bacterial gut infection, Lyme disease (yes, you can get it in Canada, you can get it in France, you can get it anywhere), a systemic yeast infection (candida), or something else that I haven't thought of yet, but someone else probably will!

#2 and #3 do NOT mean that you don't have celiac. They don't mean that you do, either--they could be totally independent of any celiac issue, but given your positive IgA, I think it's almost certain that you do have celiac.

Welcome aboard, and good luck finding answers!

[Shallyssa]

Thank you very much for answering me.

I'll check if I'm not intolerant to other allergens or if I don't have the other disease that you are talking about...cause for sure I'm not eating gluten... I'm not even eating at restaurant anymore, I'm the only one cooking for me and I have a small pocket dictionary from the Canadian Celiac Association for all the ingredients that I'm not sure about!

If I don't have dermatitis Herpetiformis do I have to avoid gluten in skin/hair care products???? I had never check for gluten before in those products!! Since last summer I had notice little red spots on my scalp (not itchy). My hairdresser first thought it was a reaction to hair coloring product but it's still there 8 months later!!!

I used to have little lactose intolerance before I had celiac disease... I said little cause the only thing I had to do was avoid drinking milk on an empty stomach! Maybe it's worst now!!?? I hate that I can't ask these questions to my doctor... she just really don't know anything about celiac disease!

Right at this moment I have bloating and really big headache. I just ate chicken, potatoes, carrots and coleslaw ...I cooked everything by myself! Also I had dried apricots for dessert...they are gluten free but they contains sulfite!! Is sulfite usually cause trouble to celiac?? I feel so angry and frustrated just because I don't know anymore what's wrong with me! I can't wait to see the GI!

If the doctor said it could take 1 or 2 months before I see the GI...do you think I have to start eating gluten now or is it better if I see the GI first??? I would like to have the biopsy as soon as possible...I'm thinking about eating gluten before...so I'll be ready for the biopsy when I'll see him!

Thank you

Julie

[Tallforagirl]

Is it possible to be IgA positifs for other disease? Is false positives happens with IgA blood tests results? I have see on the internet that an IgA result less then 34 is ok... less then 34 what? What's a normal IgA blood tests??

Just to clarify, are you talking about a tissue transglutaminase (tTG) IGA test, an anti-gliadin IGA test or a total IGA count?

tTG is very accurate, anti-gliadin IGA less accurate, and total IGA is done just to validate the other tests.

[RiceGuy]

If I don't have dermatitis Herpetiformis do I have to avoid gluten in skin/hair care products???? I had never check for gluten before in those products!! Since last summer I had notice little red spots on my scalp (not itchy). My hairdresser first thought it was a reaction to hair coloring product but it's still there 8 months later!!!

Yes, you still need to avoid gluten in these products. Although not everyone will have a reaction on the skin, we all end up ingesting shampoo. And if there's gluten in the hand soap, then you handle your food, you can end up contaminating your own food with gluten. Cosmetics should also be gluten-free.

I used to have little lactose intolerance before I had celiac disease... I said little cause the only thing I had to do was avoid drinking milk on an empty stomach! Maybe it's worst now!!?? I hate that I can't ask these questions to my doctor... she just really don't know anything about celiac disease!

Yes, it is very common for dairy and other intolerances to become more pronounced after going gluten-free.

Right at this moment I have bloating and really big headache. I just ate chicken, potatoes, carrots and coleslaw ...I cooked everything by myself! Also I had dried apricots for dessert...they are gluten free but they contains sulfite!! Is sulfite usually cause trouble to celiac??

Was there dairy or eggs in the coleslaw, like from mayonnaise or something? Potatoes are a nightshade, which do cause trouble for some, especially while healing. Sulfur dioxide or other such compounds can be troublesome. I always avoid it. They put it on dried apricots to maintain the color. When I get dried apricots, I get the ones without any preservatives, so they are darker in color.

If the doctor said it could take 1 or 2 months before I see the GI...do you think I have to start eating gluten now or is it better if I see the GI first??? I would like to have the biopsy as soon as possible...I'm thinking about eating gluten before...so I'll be ready for the biopsy when I'll see him!

If you want a biopsy (it doesn't seem necessary), then you should begin eating gluten now, to cause as much damage to the intestines as possible, thus reduce the chances of a false negative. But, given the positive blood work, it seems clear that you must not eat gluten no matter what the results of the biopsy.

[Shallyssa]

Tallforagirl I really don't know if it's a tissue transglutaminase (tTG) IGA test, an anti-gliadin IGA test or a total IGA count? I had seen 3 things in my doctor's folder ; the IgG, IgA and something else that I can't remember! You know when you are use to trust doctors you don't ask question...I used to be like that! Not anymore!!!!

RiceGuy Thank you again! I'll have to do a good clean up in my skin and hair products!! My coleslaw dressing was made with only sugar, olive oil and rice vinegar. I'm surprise about the potatoes...I'll try to see if it's the problem!

Have a nice day!

Julie

[Tallforagirl]

...Although not everyone will have a reaction on the skin, we all end up ingesting shampoo.

RiceGuy, I would debate this, I for one don't ingest any of my shampoo. While I use it it is in my hair only, once it is rinsed it is down the plughole.

Sorry, but it annoys me when people on this forum refer to "us", as in the Celiac Community, when we're all individuals and cannot all be said to behave or react the same way to something, just because we have this disease in common.

If you're going to be paranoid about the possiblity of ingesting gluten from something that gets on your hands or face, you will live your life in fear of touching a doorknob, of shaking hands, of kissing someone on the cheek. That seems a very sad and restrictive way to live your life.

Shallyssa, it's worth asking for a printed copy of your blood test results, just so you know what's was tested. If they didn't do tTG IGA they should do that, rather than rely on anti-gliadin tests which are less reliable. Also, if they did a total IGA count and this was low, this will affect any other IGA-based tests.

[ravenwoodglass]

If you're going to be paranoid about the possiblity of ingesting gluten from something that gets on your hands or face, you will live your life in fear of touching a doorknob, of shaking hands, of kissing someone on the cheek. That seems a very sad and restrictive way to live your life.

I am someone who also strongly believes that it is best to avoid gluten in personal care products. I do not live in fear of touching doorknobs, shaking hands or kissing someone on the cheek. My life is far from sad and my restictions come only from the damage done to my body by years of misdiagnosis. If you choose to use gluten personal care products that is up to you but please do not put down the many of us who choose not to take the risk. Many times because we have learned the hard way.

[Gemini]

RiceGuy, I would debate this, I for one don't ingest any of my shampoo. While I use it it is in my hair only, once it is rinsed it is down the plughole.

Sorry, but it annoys me when people on this forum refer to "us", as in the Celiac Community, when we're all individuals and cannot all be said to behave or react the same way to something, just because we have this disease in common.

If you're going to be paranoid about the possiblity of ingesting gluten from something that gets on your hands or face, you will live your life in fear of touching a doorknob, of shaking hands, of kissing someone on the cheek. That seems a very sad and restrictive way to live your life.

Shallyssa, it's worth asking for a printed copy of your blood test results, just so you know what's was tested. If they didn't do tTG IGA they should do that, rather than rely on anti-gliadin tests which are less reliable. Also, if they did a total IGA count and this was low, this will affect any other IGA-based tests.

I totally agree with you, Tallforagirl, and will add what I learned from research and questioning the medical community, plus personal experiments myself.

You cannot have a topical reaction to gluten, even if you have DH. A topical reaction is an allergic reaction, probably to wheat also, so even though the gluten won't get ya, the wheat will. It is important to understand the difference. All Celiac reactions are started internally ONLY, which will then cause a DH outbreak. The reaction is from within. It is common to have both an intolerance and an allergy, hence the confusion.

You won't have a reaction to gluten containing soap either, as long as you rinse your hands well with water. Are all you folks not rinsing well after washing? I know I never wash my hands, leave soap on them and then handle food. This is why I have successfully used skin care products AND make-up for 4 years, without a hitch of a problem. I don't have a topical allergy to wheat and I do not eat or drink ANY of my products. How do I know? I was diagnosed through blood work so for 4 years, my blood work has been in the awesome range, according to my doctor. What can a person possibly do, more than that, to clear up this confusion?

I am in no way saying all should go this way because if you feel more comfortable going totally gluten-free with non-edible products, that's fine with me on all counts but it should not be posted or thrown about that it is medically necessary...that would be false information. There is plenty of medical reference material to back this up.

I respect other's decisions about this so please respect those who follow published medical data.

[sbj]

I think it's rather unfortunate that poor Julie here now probably has no idea what to do regarding her skin and hair care products! This was the same problem I had when first coming to this forum - conflicting advice. I suppose there's simply no way around it. For what it's worth, Julie, every medical source I have checked indicates that you don't need to worry about your skin or hair care products unless you eat them.

[Fiddle-Faddle]

You cannot have a topical reaction to gluten, even if you have DH.

I found out the hard way that if you already have a DH outbreak, topical gluten makes it worse--much, much worse.

I know what the logical conclusion is about ingesting gluten. But I also know what I experienced (and that was before I knew what gluten was, and didn't understand why the anti-itch lotion and oatmeal baths were making it so much worse).

[ravenwoodglass]

I think it's rather unfortunate that poor Julie here now probably has no idea what to do regarding her skin and hair care products!

Sometimes the best thing we can do is to be super strict at first and then when we are feeling well we can add stuff back in and see if there is a change. Some of us don't have any issues with using topical gluten products and some of us do. That is really evident in the responses. I do agree that gluten can't be absorbed into the body through intact skin but for those of us with severe autoimmune impact the small amount that might get in the mouth could be enough for those antibodies to flare.

[Shallyssa]

Hi,

Did I started a fight here...

Thank you for your answers..it's helping me a lot seriously! --- Seriously; I'm a big fan of Meredith Grey - Grey's Anatomy ..some of you will understand!

Fiddle-Faddle You talked about Candida... I just finish a questionnaire on the Internet about Candida and it said if my score was over 183 it mean I probably have it...my score was 253!!! I tried the spit test - but really don't know if it's reliable..don't think so - but anyways it's look exactly like the picture and they said it mean I could have it! I have almost all of the symptoms they mentioned!! How can I get information about Candida???

A doctor called my yesterday, it wasn't the one who was supposed to call.. the secretary said he want to see me as soon as possible for a gastroscopy... and he want me to stay on a gluten free diet! I don't know what he's gonna do after that but my appointment is next Thursday (19th). I'm really nervous about it! Is somebody already had an gastroscopy????

Have a nice day!

Julie

[maile]

I don't know what he's gonna do after that but my appointment is next Thursday (19th). I'm really nervous about it! Is somebody already had an gastroscopy????

Salut Julie!

Je m'exuse, il y a longtemps que j'ecris en francais et c'est certain que votre anglais est meilleur que ma francais!

Il y en a plusieurs ici qui ont eu un gastrocopie, si vous voulez cherchez ces histoires le mot en anglias c'est "endoscopy". Moi, je n'en ai jamais sinon je puet repondre...selon les histoires ce n'est pas tres mechant, j'ai trouver cette explication:

Il s'agit est un examen qui permet d'examiner l'oesophage, l'estomac et le duod

[Fiddle-Faddle]

Julie, if you've already had positive blood work AND a good response to the diet, then the gastroscopy is unnecessary UNLESS the doctor is looking for something other than celiac disease.

However, the doctor's bank account might think that a gastroscopy is totally necessary!

Gastroscopies (yes, also called endoscopies) are not without risk, including puncture, infection, and bruising/tearing of the vocal chords from the procedure, and reaction to the sedation--which is one of the leading causes of death during "routine" procedures such as this.

I've been through 2 of them (without sedation, as I wanted to minimize that risk), and I'm still alive. I did have some permanent damage done to my vocal chords from the second one.

[Tallforagirl]

Julie, if you've already had positive blood work AND a good response to the diet, then the gastroscopy is unnecessary UNLESS the doctor is looking for something other than celiac disease.

However, the doctor's bank account might think that a gastroscopy is totally necessary!

Gastroscopies (yes, also called endoscopies) are not without risk, including puncture, infection, and bruising/tearing of the vocal chords from the procedure, and reaction to the sedation--which is one of the leading causes of death during "routine" procedures such as this.

I've been through 2 of them (without sedation, as I wanted to minimize that risk), and I'm still alive. I did have some permanent damage done to my vocal chords from the second one.

...however, most people who have been through an official diagnosis of celiac disease have had one, and this is the only instance I've heard of someone suffering permanent damage from one.

You could have celiac disease and have something else going on as well, it's not impossible, or it may not be celiac disease and could be something else entirely, which is why an endoscopy could be a good idea. If you do have damage to your villi, it will give the doctor something for future reference, in case you don't get well after going gluten-free, he will be able to repeat the procedure to see how well your villi are healing.

Every medical procedure is a personal choice though, I'm just saying don't be scared about this one, as far as medical procedures go, it's quick, painless and straightforward.

[maile]

However, the doctor's bank account might think that a gastroscopy is totally necessary!

This could be the case but in Canada, and Julie mentioned she is in New Brunswick, socialized medicine kind of takes away the whole profit aspect of a visit. the doctor's visit and the gastroscopy are covered, especially if she was referred from her primary care physician. the amount the GI specialist can bill up here is substantially less than what can be billed in a private facility from what I've been told. generally there is quite a wait list to see any specialist (just a standard referral to an OB/GYN took me 7 weeks)...and to get in that quickly implies urgency.

having said this, Julie, talk to the Doctor, yours is always the final decision to have any procedure

[Fiddle-Faddle]

...however, most people who have been through an official diagnosis of celiac disease have had one, and this is the only instance I've heard of someone suffering permanent damage from one.

One of my son's classmates had some kind of damage--he was in severe pain for days afterward. Apparently, they nicked something.

I am hearing more and more stories of damage--but then again, there are more and more endoscopies happening, so perhaps the rate of damage has not increased, we're just hearing more about it. Or perhaps endoscopies, like all other medical procedures, are suffering from underpaid, overworked hospital staff.

It SHOULD be quick, painless, and straightforward, you are right about that.

[Shallyssa]

Thank you for your answers!

Merci Maile, Ton fran

[Plaiceman]

Hi. One or two observations might be helpful to you. 1. Perhaps you should attempt to see a gastroentrologist or other such specialist--someone with a thorough knowledge of celiac disease who can give you substantially more understanding and guidance than you are getting now.

2. There is a genetic marker test--I think it is called Proteus--that offers close to absolute validation.

[Shallyssa]

Hi. One or two observations might be helpful to you. 1. Perhaps you should attempt to see a gastroentrologist or other such specialist--someone with a thorough knowledge of celiac disease who can give you substantially more understanding and guidance than you are getting now.

2. There is a genetic marker test--I think it is called Proteus--that offers close to absolute validation.

Hi Plaiceman!

I think you didn't read everything...

I'll see my gastroentrologist next Thursday! I can't wait to see what he'll tell me! I'll have a endoscopy!

..and for the genetic marker test ; I'm on a gluten-free diet for 16 months now! I don't want to start a gluten challenge before I see my specialist (he want to give me the endoscopy while on a gluten-free diet...I'll probably suggested me the gluten challenge after to get a second endoscopy! - It's free here in Canada!) You make me realize that we also have test for celiac disease sold in Canada...I didn't know it. The name is Biocard and it's 50$

Thank you,

Julie

[curiousgeorge]

I am also in canada and I only waited two weeks for endoscopy as well. It was shockingly fast. I was. however, told that I would have to pay for genetic testing if I were to have that done, which I have not.

[Shallyssa]

I am also in canada and I only waited two weeks for endoscopy as well. It was shockingly fast. I was. however, told that I would have to pay for genetic testing if I were to have that done, which I have not.

What's a genetic testing? In which situation they suggest that? I though every test like that was free here!

Julie