leadmeastray88

She also told me to eat gluten free but I can have gluten if I don't mind feeling a little bad.

Oh goodness...

There are 2 things very wrong about what she told you:

First, if you're going to have a biopsy, you HAVE to be consuming gluten for your biopsy to be accurate. A "normal" amount is the equivalent of 4-6 slices of bread a day (some have said).

Secondly, if you have Celiac's you CANNOT have ANY amount of gluten, not even a little. If you do, you're setting yourself up for some major health problems, including cancer and other autoimmune diseases. It's not about "feeling a little bit bad", it's about you having an autoimmune reaction to gluten...in other words, gluten is destroying your intestines and other organs.

Unless you don't plan on getting a biopsy (since your bloodwork was positive) then you can go ahead and start going, I might add, completely gluten-free.

You've already found a great support group! We're here to help!

Hi again,

Yes there are 5 tests they should run:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

And no, none of them are 100% accurate. In the Post-Diagnosis thread, one member posted today that they had negative bloodwork but an extremely positive biopsy; almost no villi left. Just goes to show you!

With regards to the diet, many people find that they feel better quicker on a very simple diet such as the one you mentioned. Also, many people find that cutting out dairy and soy for the first little while also speeds healing as they are hard to digest. Then once you've healed a bit, you can re-introduce them and see how you feel.

Hope that helps!

Hi there,

You already got some great advice.

I agree with skymgirl that it would be wise to do some more testing just to rule out other things. If nothing shows up, there's nothing stopping you from trying the diet. If you feel better, you have your answer. Many people here are self-diagnosed solely by positive response on the diet and are very comfortable with that decision. However, if you think you'll need a definite diagnosis to keep to the strict diet, then definitely get ALL the tests done before going gluten free.

Good luck

Wow, you sure have an array of symptoms!

If I were you, like I said earlier, I would demand an endoscopy from your GI. If he isn't willing to do it, find one who will.

Don't settle for an IBS diagnosis!! Here we like to call that "I Be Stumped". It makes sense! "Your bowels are irritated, so you have Irritable Bowel Syndrome". What next? "Your arm is sore? You have Sore Arm Syndrome".

Basically he is telling you what you already know.

I'm not sure what else to suggest to you. Some people here (including myself) have used Enterolab. They claim to be able to detect active dietary gluten sensitivity in the stool. They can also do gene testing to see if you have any of the markers associated with Celiac and gluten sensitivity. The validity of these tests is sometimes questioned here, because Dr. Fine, who invented the test, has not published his research and therefore is not "accepted" by the medical community. However, many people here who have positive tests go on the gluten free diet and feel much better, so I think there may be something to be said for these tests.

I hope you find the answers you need soon!

Unfortunately, the symptoms for Celiac is what makes it so hard to diagnose...they could be anything. There aren't really any "textbook" symptoms, as some Celiacs have no GI symptoms at all, but have migraines, vertigo, etc. instead.

What are your symptoms?

Just because your doctor said you don't have Celiac based on your bloodwork doesn't rule it out. My cousin had the bloodwork done, it came out negative, but her symptoms were so bad my aunt demanded an endoscopy, and there it was. If you're that sure that it's Celiac, demand an endoscopy.

We know how hard it is to get our doctos to listen to us! You're not alone.

Good luck You've already found a great resource

IBS - 2 weeks

Acid Reflux - 2 weeks

Sleep problems - 2 months

Lack of energy - 1 month

Headaches - 2 weeks

Memory Fog - Didn't have this

Overall, I felt 100% better by the 2 month mark. The gluten de-toxing takes awhile!

For those who are skeptical to use oats, you could always substitute them with quinoa flakes.

When I have a chocolate craving, the first thing I think of is "massive, fat-filled chocolate bar".

Here's a much better (and healthier) way that I satisfy my 2:00 p.m. chocolate craving!

You'll need:

a medium bowl of air-popped popcorn

a couple handfuls of gluten-free semi-sweet chocolate chips

a handful of mini marshmallows

a handful of peanuts (raw or roasted, salted or unsalted, you choose)

Throw all of it onto a baking sheet covered with wax or parchment paper.

Stick it in the oven at 350F and watch for the marshmallows to puff and turn a little bit golden.

Take it out, throw it back in the bowl and mix with a spatula to coat the popcorn with the melted chocolate and marshmallows.

You can let it cool overnight and throw it in a baggie to take to work, or eat it hot and straight out of the bowl with a spoon!

YUM!

Hi there!

I'm from Winnipeg, MB.

I have a cousin who is Celiac from Halifax also.

So is it possible that for the last 6 months I have had enough cross contamination to make me positive for antibodies?

I have had lays chips a few times, but I generally eat healthy foods.

So should I only be eating things that say gluten free on them?

I have been so careful reading every label for gluten ingredients, only eaten out maybe once a month at the most & then i get burgers without buns, no fries just meat & lettuce and tomato.

Are there other ingredients that can cause a positive antibody test?

I am discouraged and confused. I thought I was doing so good on this diet. Yikes.

Hi Diane!

I'm so sorry to hear that you're still having trouble.

The first thing that set alarm bells off with me in your post was the burger issue - have you made sure they don't put bread crumbs in them as filler? Learned that the hard way at a restaurant.

There's a link on this site that lists all of the ingredients you should watch out for -

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

Other than that, do you take vitamins/supplements? Have you checked them for gluten?

Some people are so sensitive, they can't use shampoo, soap, creams or makeup containing gluten. You may be one of them.

Have you replaced things in your kitchen that gluten clings to? Wooden spoons? Toaster? Colander? Old scratched Teflon pans? etc.etc..

Then again, you could just still be healing. Like Gemini said, sometimes it takes some people longer than others.

Good luck

My doctor has no problem prescribing me Buscopan for this. I've tried other antispasmodics and this one has worked the best for me. Whenever I feel like I've been glutened, I take it and feel better within the hour. It says it can make you drowsy, but it isn't a debilitating tired (for me anyway). You can however take it up to 3 times a day if your symptoms are persistent. I just take it when I need it. I find that if I use a hot magic bag it helps also!

While he was pushing me to take anti-depressants, I told him I wanted a blood test. When it came back positive, he was shocked and I believe it honestly never even crossed his mind as a possibility. He had been sure it was irritable bowl aggravated by stress.

That's what my doc told me - IBS due to stress. And he refused me a scope because he said I was stressed out enough.

My dad's cousin had "IBS" for years, and she just had a Celiac panel last week which came back positive. Go figure.

I wonder what percentage of supposed IBS is actually celiac??

I don't even want to know :S

CRUST:

Note: If you're like me and like a thicker crust, I double this!

1 cup chopped pecans

1 cup gluten-free flour

1/2 cup butter

1 tbsp sugar

Melt the butter and add to the dry ingredients. Press into a 9x13 pan and bake at 350 for 20 minutes. Cool completely before adding the filling

1st LAYER of FILLING:

1 8-oz package plain cream cheese, softened

1/2 small tub Dream Whip

1 cup icing sugar

Whip together with electric beater and spread over cooled base.

2nd LAYER of FILLING:

1 package Jello vanilla pudding

1 cup cold milk (half of what the box calls for)

Mix together, chill in fridge. Spread on top of 1st layer.

3rd LAYER of FILLING:

1 package Jello chocolate pudding

2 cups cold milk (as directed)

Mix together, chill in fridge. Spread on top of 2nd layer.

Cover with plastic wrap and chill in fridge and ready to be served. When serving, add a dollop of the leftover Dream Whip and drizzle with chocolate sauce. Yum!!

The pediatrician said that they would run a blood test if my blood test and biopsy came out positive for Celiac.

My blood work and I don't know which test was done came back negative, and my biopsy in 2004 was negative. I just had another biopsy done on Friday but since I have been gluten free I don't think it will be positive. My IgG ELISA test came back positive for wheat and rye. I was thinking about the stool testing for him because a blood draw on a 3 year old would be tramatic. If a stool test is more sensative which is according to Dr. Fine's website I would rather avoid a blood draw. However I have no idea if this test is even reliable - my doctor had never heard of it. She is a Natropath and often does other testing Western Medical doctors don't do.

Anyway I am just so frustrated. I have one child with chronic constipation and another one with diareha. I am just worried.

Thanks for the posts.

Crystal

Crystal,

I am so sorry that you're having so much trouble.

The trouble with Enterolab is that Dr. Fine's research has not been published. Because of this, there are few doctors who know about his testing and even fewer who consider it to be a valid method of testing. The validity of these tests has been questioned time and time again on this forum. You will get many different opinions.

The one thing you need to understand is that Enterolab cannot diagnose Celiac. They claim to be able to detect active dietary gluten sensitivity in the stool, but they themselves state they cannot diagnose Celiac.

If you want my honest opinion, I wouldn't get Enterolab testing done on your children until you have completely ruled out Celiac, even if that means getting a blood test and/or biopsy done. Your children obviously have symptoms and your pediatrician should be willing to test even if yours come out negative. Take celiacmommy for example on this forum, she has a child with Celiac and neither her or her husband have it. This is possible. If you have to, demand your pediatrician to test.

The other problem with Enterolab is that down the road you may start questioning their validity, and wonder if your children really do have Celiac. At that point, testing would be impossible because they would have been gluten free for so long the tests won't be valid.

If you need to know if they're Celiac, I would highly suggest getting the bloodwork and/or biopsy done on them. And this is coming from someone who used Enterolab.

If all else fails and you still suspect gluten is the culprit, there's nothing stopping you from putting your entire family on a strict gluten-free diet, even if your husband objects, and see what happens. This is about the health of you and your children, not about whether he gets to eat bread or not.

In any case, I hope this forum helps you; it's helped me in the worst of times.

Good luck

Yes, nausea can definitely be caused by the gluten!

I was nauseous so often before going gluten free that my doctor thought I was pregnant.

The nausea disappeared after taking gluten out of my diet.

However, Enterolab claims to be able to test up to a year after starting the gluten-free diet. There are other labs doing testing too, though I haven't seen their claims. Perhaps others will chime in with comments on them.

Please take note though that Enterolab cannot diagnose Celiac disease. It can only detect active dietary gluten sensitivity by stool sample.

Enterolab can find gene markers for Celiac, but this in itself is not a diagnosis.

What you should do is really up to you. Do you feel better gluten free? If you do, then you know gluten is a problem for you. Now you need to make a decision, is your reaction to gluten enough to make you stick to the diet? Or do you really need a diagnosis to be sure? Some people here are self-diagnosed and are comfortable with that decision.

If you DO want the biopsy, you need to be eating gluten. How much and for how long is up for debate, there is no 'handbook' for this. Considering you have only been gluten-free since December I'd say a few months should be enough.

Hope that helps Good luck!

So I went 3 days without gluten/wheat and felt crappy/tired all the time. I then ate a sandwitch with both wheat and gluten and felt really really good for a few hours. Then it went back to normal crappy mode that evening. Is this a normal reaction that you should feel better after ingesting gluten for a few hours? Or were the doctors wrong? =/

btw celiac was ruled out with multiple things (biopsy/blood) but antibodies were positive.

Thanks.

If you are indeed gluten sensitive, like mushroom said, you still felt crappy after 3 days because you were detoxing. It can take 2 weeks or more before you can start feeling better after going gluten-free. You need to make sure you are completely gluten-free and give it another shot!

Greetings,

I am desperately looking for some answers and what to expect before I go to the Gastro...AGAIN!

Here is the scoop...I am 30 have had Hasimotos tyroiosis for 17 years. I am on a pretty high dose for that. I have had my gall bladder out a few years ago for luctioning reasons (or lack there of) I had a test done to confirm that before surgery. I have had peptic ulcers and sonstant stomach issues. After a second trip to the ER I went to my primary care Dr. and after giving her an updated family history..(once case of celiacs...thyroid issues, diabities and both of my grandparents dying from intestinal related diseases) she ran the test for Celiacs. Here are the outcomes..

tTg, IGA 47

Gliadin IGA 43

Gliadin IGG 13

She told me that It is probably celiacs but to keep the appt that was already scheduled with the GI for more tests to confirm. I have already had an endoscopy from the GB surgery so I am not freaked about that. I just want to be prepared as to what the chances are or celiacs and if the numbers are not high? Does anyone know if it can be something else.

Hi there! Welcome to the board!

In order to know if your blood levels are high, we need to know the normal ranges for that specific lab. Either way though, from what I've seen on this board in the past, the numbers you have seem pretty high. Your doctor is right in saying that it is probably Celiacs, and is also right in sending you to a GI for an endoscopy. Usually though, bloodwork (when positive) is very conclusive. You will be able to know the extent of the damage you have with a scope, but other than that I'd say you've found out what your problem is. Along with your family history and existing symptoms and other conditions, I think others would agree that Celiac fits.

I know it can be scary and intimidating at first, but you've come to the right place to learn everything you need to know! Ask, ask away!

Good luck and hope you start feeling better soon!

These are my personal favorite:

https://www.celiac.com/gluten-free/index.php?showtopic=49937

If you love peanut butter, you'll love these!

I make a batch and cut them and freeze them - so I just grab one as I head out the door!

You should also check out the Recipes thread in this forum, there are some great ideas there!

Not sure what to think of this:

Open Original Shared Link

DISCOVERY OFFERS HOPE FOR CELIAC SUFFERERS

Canwest News Service Published: Wednesday, January 07, 2009

A researcher at the University of Alberta has found a cost-effective way to produce antibodies against gluten, potentially opening up a whole new world for people with celiac disease. Celiacs cannot tolerate gluten -- a protein found in wheat, barley and rye -- and currently there is no cure. Hoon Sunwoo, a research associate in the faculty of pharmacy and pharmaceutical sciences, has produced antibodies in chicken eggs that will allow celiacs to eat bread and other foods containing gluten. It will head to human clinical trials this fall, provided it passes animal safety studies. Gluten helps bread and other baked goods bind and prevents crumbling, and is used in many processed and packaged foods. It is estimated that one in 133 Canadians is affected by celiac disease.

Costco also has great prices on vitamins.

I want to point out that the cost of name brand prescription drugs is not controlled by the cost of the ingredients themselves; the cost is controlled by the manufacturer's need to recoup their research and development expenses while showing a profit (which they owe to their shareholders). If the pharma companies could not recoup their R&D expenses then there would be no incentive for them to develop new drugs. (Not that I'm defending the pharma companies and some of their practices - don't get me wrong ... )

For instance, when they finally do come out with a drug that helps us to digest gluten safely, you can bet that it's gonna cost a heckuva lot more than just the expense of the ingredients themselves. They've been formulating and testing these drugs for years and that costs a pretty penny - they have the right to recoup those expenses and make a profit.

Even though Costco can offer these low prices, there is obviously even still a percentage of that which is 'profit' for the companies. I just find that the present percentages of profits are astounding, and incredibly high. You can't deny that. That is simply robbing us blind.

I got this in an email and was left speechless!

If you buy lots of meds and pay through the roof, you may want to read this!!

P.S. The lady who did this is a Budget Analyst, I did not do this

-----------

Did you ever wonder how much it costs a drug company for the active ingredient in prescription

medications? Some people think it must cost a lot, since many drugs

sell for more than $2.00 per tablet. We did a search of offshore

chemical synthesizers that supply the active ingredients found in

drugs approved by the FDA. As we have revealed in past issues of

Life Extension a significant percentage of drugs sold in the United

States contain active ingredients made in other countries. In our

independent investigation of how much profit drug companies really

make, we obtained the actual price of active ingredients used in

some of the most popular drugs sold in America

.

Celebrex:100 mg

Consumer price (100 tablets): $130.27

Cost of general active ingredients: $0.60

Percent markup: 21,712%

Claritin:10 mg

Consumer Price (100 tablets): $215.17

Cost of general active ingredients: $0.71

Percent markup: 30,306%

Keflex:250 mg

Consumer Price (100 tablets): $157.39

Cost of general active ingredients: $1.88

Percent markup: 8,372%

Lipitor:20 mg

Consumer Price (100 tablets): $272.37

Cost of general active ingredients: $5.80

Percent markup: 4,696%

Norvasc:10 mg

Consumer price (100 tablets): $188.29

Cost of general active ingredients: $0.14

Percent markup: 134,493%

Paxil:20 mg

Consumer price (100 tablets): $220.27

Cost of general active ingredients: $7.60

Percent markup: 2,898%

Prevacid:30 mg

Consumer price (100 tablets): $44.77

Cost of general active ingredients: $1.01

Percent markup: 34,136%

Prilosec: 20 mg

Consumer price (100 tablets): $360.97

Cost of general active ingredients $0.52

Percent markup: 69,417%

Prozac:20 mg

Consumer price (100 tablets) : $247.47

Cost of general active ingredients: $0.11

Percent markup: 224,973%

Tenormin:50 mg

Consumer price (100 tablets): $104.47

Cost of general active ingredients: $0.13

Percent markup: 80,362%

Vasotec:10 mg

Consumer price (100 tablets): $102.37

Cost of general active ingredients: $0.20

Percent markup: 51,185%

Xanax:1 mg

Consumer price (100 tablets) : $136.79

Cost of general active ingredients: $0.024

Percent markup: 569,958%

Zestril:20 mg

Consumer price (100 tablets):$89.89

Cost of general active ingredients $3.20

Percent markup: 2,809%

Zithromax:600 mg

Consumer price (100 tablets): $1,482.19

Cost of general active ingredients: $18.78

Percent markup: 7,892%

Zocor:40 mg

Consumer price (100 tablets): $350.27

Cost of general active ingredients: $8.63

Percent markup: 4,059%

Zoloft:50 mg

Consumer price: $206.87

Cost of general active ingredients: $1.75

Percent markup: 11,821%

Since the cost of prescription

drugs is so outrageous, I thought everyone should know about

this. It pays to shop around! This helps to solve the mystery as to why they

can afford to put a Walgreen's on every corner. On Monday night,

Steve Wilson, an investigative reporter for Channel 7 News in

Detroit , did a story on generic drug prices gouging by pharmacies.

He found in his investigation that some of these generic drugs were

marked up as much as 3,000% or more. So often we blame the drug

companies for the high cost of drugs, and usually rightfully so. But

in this case, the fault clearly lies with the pharmacies themselves.

For example if you had to buy a prescription drug, and bought the

name brand, you might pay $100 for 100 pills.

The pharmacist might tell you

that if you get the generic equivalent, they would only cost $80,

making you think you are saving $20. What the pharmacist is not

telling you is that those 100 generic pills may have only cost him

$10!

At

the end of the report, one of the anchors asked Mr. Wilson whether

or not there were any pharmacies that did not adhere to this

practice, and he said that Costco consistently charged little over

their cost for the generic drugs.

I went

to the Costco site, where you can look up any drug, and get its

online price. It says that the in-store prices are consistent with

the online prices. I was appalled. Just to give you one example from

my own experience I had to use the drug Compazine which helps

prevent nausea in chemo patients.

I used the

generic equivalent, which cost $54.99 for 60 pills at CVS. I checked

the price at Costco, and I could have bought 100 pills for $19.89.

For 145 of my pain pills, I paid $72.57. I could have got 150 at

Costco for $28.08.

I would like to mention, that

although Costco is a 'membership' type store, you do NOT have to be

a member to buy prescriptions there as it is a federally regulated

substance. You just tell them at the door that you wish to use the

pharmacy, and they will let you in.

They did run the total IgA - that is the serum IgA. Based on these lab results, she is not IgA deficient.

The tTG IgG is typically run when you are IgA deficient (since the IgA based tests will not be accurate).

No one test is perfect, and sometimes people are only positive on the 'older' tests and not the newer tests. You may want to follow up with a biopsy since you have symptoms and an inconclusive serology.

My bad, I missed that one number - forget what I said

What happygirl said is right though - an endoscopy biopsy may be useful for two reasons:

1-to test for Celiac

2-to explore and make sure everything else is okay

Hi there,

I would say that YES, you need more tests. The thing about the ones you got is that they didn't do an IgG or Total IgA. What the total IgA does is it tells you if you're "deficient" in those antibodies (and if so, those IgA tests you got mean nothing!) and then thats where the IgG comes into play instead. Before going gluten free, I would suggest re-doing the entire panel, ask for ALL of these:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

As for the mouth sores, I get them immediately following a glutening. It's how I know I've eaten something I shouldn't have. If it was a bad glutening, it's followed by an extreme GERD attack. So you could say that they could be attributed to Celiac. I should also add that thyroid issues (and other autoimmune conditions) are very commonly related to Celiac, as if you have one autoimmune condition it predisposes you to others.

I hope that helps, good luck!

Whenever I'm constipated, this is what I do and it is the ONLY thing that works for me. Best part is it's NARURAL and SAFE for anyone!

I boil water, fill a tall mug with it and drink it straight. NO lemon, NO tea or it won't work! Just boiling hot water, as hot as you can stand. It's unbelievable how it works. I did this multiple times when I had stomach surgery and hadn't gone in 4 days and couldn't push, and then I went within the hour. My aunt who is an RN told me about this and I know from experience it works like a charm!