leadmeastray88

^^ What they said

Who would spend $400 on a test 'just because'? Not me. Unless you have that kind of money, of course

Clearly, those who go through Enterolab have a sneaking suspicion that is what is making them sick. I was one of those people. I was confident even before using Enterolab that I had a problem with gluten because I started the diet on my own - and had amazing results. My gastro refused to listen to me, so it was nice to see some validation on paper for what I was doing.

Celiac Disease and Gluten Intolerance are medically proven to be on the rise. Because of this, I don't find the results surprising at all.

If you read the Enterolab FAQ's on their site, it will say something like, it doesn't matter what your numbers are, if you're positive then you're positive. A higher number does not necessarily mean more damage, and a lower number (but still positive) does not necessarily mean less damage. Its like being pregnant, you either are or you're not.

I scored only an 11 on the IgA test, yet have had miraculous results from the diet, which along with a family history and resolution of symptoms scored me a doctor's diagnosis.

Hope that helps!

I'm afraid so. Some of us don't tolerate oats either, no matter how pure they are.

Bea

Thanks Bea, I think I'll stop eating it from now on!

Hi Kim

Which Sobey's was it?? I go to Unicity (close to home) and they have a lot of gluten-free options but not a dedicated section! I haven't been brave enough to try oats since going gluten-free sorry you didn't take to them well.

Speaking of local gluten-free options, have you tried the EnviroKidz organic cereals? I love the peanut butter panda puffs as a treat once in a while and bought some from Lorenzo's. Every time I eat them I get a bit of an upset stomach and feel tired.

Has anyone who has eaten these had a similar reaction? I just got results that I'm not lactose intolerant and I have milk on my creamy rice breakfast cereal with no problems, so I know it's not the dairy.

Thanks,

Jillian

Hey Jillian!

This particular Sobeys was the one on Taylor Ave., though the one on Dakota also has a gluten-free section. That's too bad that yours doesn't! It's very convenient, may be worth the trip.

I absolutely love the Gorilla Munch by Envirokidz People at work make fun of me all the time for eating "5-year olds cereal" lol!

I've had the Panda Puffs before as well and have never had a reaction, hmm... I looked at the ingredients online and there's corn in it..have you noticed a similar reaction when you eat anything else with corn in it?

This has happened to me so many times

Even just last night my boyfriend and I went out for supper and he had a chicken club sandwich...and I made him use mouthwash before I'd kiss him goodnight

It's just a habit that you have to get into! And if he's worth it he won't mind

So I was grocery shopping at Sobey's a few days ago and passed through their gluten free section...

I was so excited to see oatmeal there - Glutenfreeda's Maple Raisin with Flax oatmeal. This was the first time I've tried oats since going gluten-free a year ago.

I've had it every morning for the past couple days for breakfast...and I've been noticing that I get an intense headache about an hour later every time. Not sure if its coincidence..

It says its made in a dedicated facility and with pure uncontaminated oats. Is it possible for this to be a reaction then??

Thanks in advance!

Thank you. I was afraid of that. I have an appt. with a ge on the 19th, but I dont' know when they will schedule the endoscopy for. I've been gluten-free for about 2 weeks now, and I'm deathly afraid of eating any gluten. I'm even having dreams that I eat a little and then realize it was gluten. LOL Will being gluten-free for a few weeks still make a difference in my endoscopy results, or do you still think I should go back to eating gluten again? Thanks for your help!

Going gluten free for any period of time is not a good idea when you're planning on getting a biopsy.

The biopsy is valuable for many reasons, the most important being determining how much damage you may have, as well as ruling out any other conditions. Then if you have a negative biopsy, you may always wonder "what if I hadn't gone gluten free", and be kicking yourself in the hiney for it

If you plan on getting that biopsy, please keep eating gluten until it's done, and hopefully it won't take you too long to get in for the procedure Good luck!

I have never had a problem with fresh, store-bought raw meat before. Cold cuts, on the other hand, is a totally different story. I know Freybe's and Grimm's packaged meats are gluten free - it says right on the label. Those are the only ones I buy.

Unfortunately, there isn't a concrete answer to that question.

Personally, I am self-diagnosed gluten intolerant and have significant physical health improvements to prove it. I haven't been able to find a consistent doctor who will take me seriously, so I pursued it myself and have never looked back. Any doctor I see has no problem making sure the medication they prescribe is gluten free, same thing at the pharmacy. Most restaurants will take you seriously, but you have to want them to be serious about your situation.

You can't expect someone to take precautions when your well-being is in their hands unless you absolutely insist on it. I would say it's the same in any given situation..even if you don't have diagnosed Celiac Disease, it's easy to convince someone that what you have is just as serious: "I have a severe allergy to gluten", "I will get very, very sick if I eat gluten", etc. And more often than not, (I have found in my own personal experience) people will listen to you and will help you when you help them understand. I don't think a clinical diagnosis is necessary to make people listen.

Some people will never ever get a diagnosis even if they do have it, because the testing at this point in time is so unreliable and just not where it should be at this point. Research and education is getting much better, but we have a long way to go. In my mind, if it makes you feel bad, don't eat it. If you want to be respected and listened to, then make people understand!

Before I went gluten-free, my B12 level was at 80. One doc told me I should be on shots, another that I should just be on sublingual supplements. I stuck with the supplements.

After going gluten-free and supplementing for about 6 months, my B12 was up to 800.

As for how I felt, I started both the diet and the supplements around the same time so I can't say which worked faster! Before I was extremely tired even after 10 hours of sleep, now I don't have that problem anymore..

I hope that helps!

Sure, it's possible! Reactions are different and vary in intensity and duration from person to person. If you ate gluten for every meal for 2 straight days, then I'd say that's a reasonable amount of time to be sick.

If you feel better gluten free, then why not just stick to it? You have nothing to lose but your nausea, and you don't need a doctor's prescription!

My doc told me I had IBS too...and I say "BS" to that. Go with your gut...literally

At this point, I would wait and see what the biopsy says. The doctor can't always tell if you have Celiac until they look at the slides from the samples. I'm not sure if 4 weeks was long enough to affect the intestine...I would think it depends on how much damage you had in the first place. But you're right - your doc should never have told you to go gluten free beforehand. Now if the biopsy is negative, you may always wonder "if only"...

If I were you, I would take the positive blood tests into extreme consideration. Because you tested positive for all of them is very telling, in my opinion. It's like being pregnant...you either are Celiac or you're not, you can't be just a little bit Celiac. If you're positive across the board then you're Celiac IMHO.

It's your decision whether to do a gluten challenge for another biopsy in the future...but you may only make yourself sicker and still not get a diagnosis.

My advice would be just to go gluten free regardless of what the biopsy says. We have people here who have repeatedly tested negative on biopsies but their lives have improved dramatically on the diet. It's really up to you though!

Good luck!

In my opinion, a month-long gluten free diet is not long enough to be able to determine that it isn't an issue for you.

I would suggest giving it another go, except for a good solid 3 months. You said you noticed mild improvement, that's still something!

It took 2 months for all of my symptoms to start going away, about 6 for them to be completely gone. I had every single symptom you listed. For 4 years I was on a double dose of Losec for my acid reflux, now I don't have to take anything. I also had chronic constipation, now I am completely regular. I used to have terrible mid-day fatigue, now I have so much energy. Maybe it'll be the same for you, maybe not. You won't know unless you try. Like you, I had negative bloodwork, yet the gluten free diet has obviously done wonders for my health.

What other avenues have you explored?

This won't necessarily diagnose you with celiac disease, but since the diet is the same, it makes no difference operationally.

This is incorrect - if you are diagnosed with DH, then you are also diagnosed with Celiac Disease. DH is the skin manifestation of Celiac Disease, that's why the "treatment" is the same: the life-long gluten free diet.

With the removal of gluten, the DH should clear up as well as any digestive issues you have.

Here is a link to more info on DH:

https://www.celiac.com/categories/Dermatiti...Celiac-Disease/

I was aghast to get an email that states: "My mom has gone to see a Naturopath and done an allergen bloodtest and Gluten came in through the roof… so she is trying to eliminate it as much as possible. "

What is the significance of a high gluten level in the blood (as opposed to high antibody levels, which can indicate Celiacs disease)?

Can a naturopath conduct any type of valid test for gluten intolerance?

To the best of my knowledge, a naturopath can conduct many kinds of blood tests for anything. I think the testing methods are more or less the same, just the treatment aspect is a natural, holistic approach.

Many diagnosed people here have seen naturopaths who have discovered their Celiac Disease.

In response to your question, an allergen blood test is not the same as the bloodwork for Celiac Disease...it is not an allergy, it is an autoimmune disease. Therefore if this person was tested for allergens, then the results are saying that she has an allergy to gluten, not Celiac Disease. Allergies cause the antibody IgE reactions, and Celiac Disease causes IgA and/or IgG reactions.

I would suggest she get a Celiac panel done that looks like this (before she starts the diet):

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Another possibility is that the person whom you are referring to has actually had these antibodies tested, and the person who wrote you the email is mistakenly calling it an "allergen". In which case, she has positive blood work for Celiac Disease.

Sorry, I didn't really answer your original question

Gene testing...

Well, it could help. But your doctor theoretically can't use it to diagnose you. Primarily because the prominent genes associated with Celiac Disease are also the most common ones in the general population - and not every person with those genes have Celiac.

The only thing gene testing will do is tell you which ones you have - nothing more. They aren't diagnostic because they can't tell you if you have Celiac Disease or if you'll ever develop it - just that you're more genetically predisposed.

Furthermore, we have diagnosed Celiacs here that don't carry the "common" genes they look for. So we have a long way to go in terms of genetic testing.

It's really up to you!

Hi there,

I'm not surprised that your results for Celiac were negative, because you were gluten free for a month already.

Something you should know is that a wheat allergy and Celiac are not the same thing. You can have Celiac and not have a wheat allergy, if that makes any sense to you..allergies cause an IgE reaction, and Celiac causes IgA and/or IgG reactions. As far as I know, you don't need to be consuming wheat to have a wheat allergy test done, but it is the opposite for testing for Celiac disease.

You do have options though. You could either eat a gluten-filled diet again (for atleast a month I'd say at your point) and get your blood re-tested and possibly biopsy.

I don't know much about dermatitis herpetiformus (as well as the unusual location you mentioned) but you can also get that biopsied. If that is positive, then you have Celiac.

You mentioned your symptoms resolved on the diet - if you're not the kind of person who needs a definitive diagnosis to stay on the gluten free diet, then you could always just continue what you're doing and feel better! Many people here are self-diagnosed Celiac or gluten intolerant and are comfortable with that decision.

Good luck! And welcome.

I wouldn't know personally about the maltodextrin. I just came to the computer and google Tums after seeing that word and a lot of responses came up that Tums contained gluten. So I assumed it was the maltodextrin, since malt is a barley ingredient and contains gluten in Rice Krispies... Again, I don't know personally, I've just already made too many mistakes to chance it again.

Maltodextrin doesn't have malt in it:

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

8) Maltodextrin is prepared as a white powder or concentrated solution by partial hydrolysis of corn starch or potato starch with safe and suitable acids and enzymes. (1) Maltodextrin, when listed on food sold in the USA, must be (per FDA regulation) made from corn or potato. This rule does NOT apply to vitamin or mineral supplements and medications. (2) Donald Kasarda Ph.D., a research chemist specializing on grain proteins, of the United States Department of Agriculture, found that all maltodextrins in the USA are made from corn starch, using enzymes that are NOT derived from wheat, rye, barley, or oats. On that basis he believes that celiacs need not be too concerned about maltodextrins, though he cautions that there is no guarantee that a manufacturer wont change their process to use wheat starch or a gluten-based enzyme in the future.

That being said, it is always best to call the manufacturer.

Yesterday I glutened myself by mistake, had lemonade made in canada where flavoring is wheat base....in the US the flavor are gluten free unless otherwise indicated with the word weat....canada needs to get there act together on labelling.

I'm from Canada and flavoring does not necessarily mean it has gluten in it. I always call to double check, and I have to say that 99% of the time, it's safe.

No, labeling is not where it should be. That is not exclusive to Canada, however.

At this time, it is the responsibility of the person consuming it to make sure it is safe.

I noticed that you didn't have a complete Celic panel done. These are the tests that should be included:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The ones I bolded were the only ones you had done, and they are less specific for Celiac than the tTG and EMA one.

I would suggest to keep eating gluten for a few weeks and to take this list to your doc and get it re-done. You may be surprised! Have you talked to your doc about a biopsy?

Alternatively, you could just stick to the diet (strictly) and see how you do! That is, if you don't want/need a clinical diagnosis to stick to it, and wonder to yourself "do I really need to be doing this?" Many people here (including myself) have been self-diagnosed and are comfortable with that decision. You can't go halfway with this, it's definitely a learning curve but could potentially be extremely beneficial for you!

Good luck

My Enterolab results were much like yours - only slightly elevated above the normal range.

I asked Enterolab about this because I was concerned, and they told me you have to look at it as if it were a pregnancy test - you can't be a little bit pregnant, you either are or you aren't. So a positive result of any kind is still positive, no matter what the numbers are. All of our bodies are different from one another's so it's no wonder we all have different results.

You've already received great advice from Momma Goose. If you're still skeptical and if you want further testing you should definitely pursue it before starting the diet.

Let us know how everything goes. Good luck

You're right - you have very high risk of having false negative bloodwork! Even people who eat a normal gluten diet can have false negatives though, you have to know.

If you want to re-test you should eat gluten again for atleast a month and see what happens.

Either way though, you feel better gluten free so even if the tests are negative go back on the diet!

I definitely had more C.

Even as a child, I'd wake up with excrutiating stomach pains in the middle of the night and sit on the toilet for hours - I wouldn't go for days at a time. My mom told my pediatrician and he told her that I needed to eat more fibre. I know now why that didn't work

Since going gluten-free I haven't had a problem anymore Once to twice a day is about normal for me now.

Anyway, my doctor told me Celiac is definately a possibility and to start the gluten-free diet right now. I can't wait to feel better!!!!! He also sent me back to the GI doc, I see him on Monday.

Hi Kim, I'm Kim too

I definitely second what ravenwoodglass said...you NEED to keep eating gluten until you have all the testing complete by your GI doc, otherwise there's an even higher risk of having a false negative.

I don't have clinical diagnosis, because I didn't have positive bloodwork and I didn't get a biopsy. However, I have a family history and all of my symptoms resolved on a gluten-free diet, so I've been deemed "probably Celiac". I consider myself to be self-diagnosed.

My family and friends have seen how sick I was, so it was really a relief when I told them I was 'gluten intolerant', and that it makes me sick to eat it. They've seen my improvement, and don't question it. My step-grandmother is extremely skeptical, and says "well you can eat it sometimes can't you, because you're not Celiac?" and whatnot, but for the most part they are supportive and understand. My friends especially, they always buy me my favorite gluten free snacks such as Cheechas and Rice Works chips and whatnot.

As far as public situations such as restaurants, I say I have 'Celiac Disease' because I think they take it more seriously. It's so important that they know that preparing your food is a huge responsibility and they need to take necessary precautions.

Some of my in-laws didn't understand at first when I chose not to receive the host at church anymore, and said "Can't you just have a little piece?" and I say "No, because even a tiny bit will make me very, very sick." Then they understood. You just have to be calm and politely explain.

Those who truly care about your boyfriend will understand. Those who do question/are skeptical don't matter and can shove it. You can't put a price on your health. It ultimately doesn't matter what other people think because they don't know how you're feeling.

Take care