Lisa

Hi Everybody!

My boyfriend, after years of suffering, just has been diagnosed as Celiac. We have been learning as much as we can in the last 2 weeks, but even that we have been very careful in what he eats, he still experience problems 50% of the times that he eats.

Is that normal?

Welcome to the Board!

Yes, it is very normal. Gluten free two week is a relative little time to heal. It has taken yeas to conclude that your boyfriend has Celiac and it will take some time to heal. Some people see a difference in a few weeks and others will take several months to see a difference in their health. It can take up to years for some with severe damage.

Make sure that he has a dedicated toaster, colander, and wooded spoons and scratch teflon get lost. Gluten can hide everywhere.

Lotions, toothpaste, shampoos and shaving creams could use a double check for gluten ingredients.

Let us know if we can be of help. We are a very interesting group.

Happy Birthday Jenny! Have a wonderful one. Your deserve it.

I agree with most of you that said that the diet is very adjustable (as I speak two after the initial fact). It has become second nature for me as it has for others.

If a person show a lack of preference for a certain gluten food item and makes reference of having a food allergy, fine. That fact may be dishonest and deceptive, but it is their choice and I have no control in their actions.

BUT it effects the waiting staff. When I have to opportunity to eat out in another city, I explain my "medical diet". Often, before I am even finished the waiter says "Is it an allergy", in a very non-challant manner. I quickly indicate that it much more than an allergy and I can become very ill.

Choosing food or not choosing food and referring to an allergy for the sake of preference, diminishes the seriousness of MY request when ordering gluten free. Now, that bothers me quite a bit.

Need verses Choice should be clarified. Gluten free fad diets may be beneficial to some, but don't cheapen my only option!

dude... great response, but who the hell is Alexis Stewart ????

Oh my, too funny!!!

Bravie,

You have had some wonderful giving people here offering and extended hand to help you cope with the diet. You don't appear to be very accepting, but more comfortable in the place that you find yourself.

As Patti says, it is common to have ups and downs, but you have to be a player here. You are sabotaging your own health by some of the food choices you make.

I can assure you, if you take one full month to be totally gluten free, you will see and incredible difference in how you feel. It CAN be a new beginning for you, but you have to want it.

Doctors can't do it...only you can.

Hi,

Before I knew I had trouble with gleuten, I was in intense pain all the time, I was in pain for so long, I thought everyone felt this way all the time and I made a habit of ignoring it. Can you beleive it?

But since I cut out wheat products, and things contaminated with wheat, I have experienced my first pain free days ever!

However, now that I am pain free most of the time, I realize what a pain in the booty my menstral cramps are. Man do they hurt!

I am having a hell of a time with menstral cramps, not to mention if I get a headache, I am pretty much screwed.

My doctor says that she does not know of any pain medications I can take that would not be totally overkill - she suggested some herbal stuff, but it is not cutting it.

Before I knew I had celiac issues, I took ibeuprofin. I heard that in Canada, they have meds that I can take, but that is the extent of my lead: meaning I have no idea what meds, where to get them or why they might be OK coming from out of Canada, much less how to order them.

Any help here? This is interfering with my ability to focus at work, to sleep and feel comfortable doing everyday things. And the worst part, is that this is going to continue to happen once a month for the rest of my life!!!

Any helpful suggestions would be much appreciated.

From Wendy

Wendy,

Welcome to the Forum!

You mentioned that you have cut out wheat and things contaminated with wheat. You might need to go an extra step and be totally gluten free.

Being diagnosed with Celiac (and I assume that you have) you need to eliminate all wheat, malt, barley, rye and oats from your diet, and perhaps go dairy light of eliminate it all together for some time.

Many things that can hide gluten includes lipsticks, lotions, toothpaste, shampoos, medications....ie. anything that can get into your mouth needs to be checked for it's gluten free status.

Once that is achieved, perhaps your headaches may improve. I know several people with Celiac who get terrible migrains when glutened.

Tylenol - Extra Strength, Geltabs, Gelcaps, Tablets, Caplets... are all gluten free

Motrin - IB Caplets, IB Gelcaps, IB Tablets....are gluten free

Hope this helps.

The following McNeil Products have been tested and do not contain detectable levels of gluten:

Children's Mylanta Tablets Bubblegum

Regualr Strength Mylanta Liquid Original Flavor

Maximum Strength Mylanta Liquid Original Flavor

Mylanta Ultra Tablets Cool Mint

Mylanta has gluten in it; I learned the hard way by taking it years ago and was sick all summer with upset stomach. I used Arthritis Tylenol; which is gluten-free. It has worked for me for a number of years; but I would used just Tylenol for a 13 year old.

I have contacted the company and will post a response regarding the "gluten" status of Mylanta.

Hi ,

As a newby here...... i noticed that most people had the type of celiac that they had in the signature section of their posts and was just wondering what that was all about? What type of genetic testing do I need to know what type of celiac I have? Any advice would be greatly appreciated. I had the biopsy done and an antibody test done but that was all. Thanks Justine

Justine,

There is no type of Celiac. You either have it or you do not. Some people here have opted to have testing through Enterolabs, which would show a sensitivity to gluten, but it does not diagnose Celiac. Some have been satisfied that the sensitivity is cause for a gluten free diet, and have had success with the diet.

The avenues for testing for Celiac are blood tests, an endoscopy exam and biopsy or a positive dietary response.

Great work Chris!

I am anxious for a a response. Ready and available.

x

i SEE THAT SOMETIMES MALTODEXTRIN IS MADE WITH CORN BUT ISENT IT USUALLY MADE WITH

BARLEY?

In the US maltodextrin is most always derived from corn.

Welcome,

You can find the safe and forbidden list here on the "site index" on the opening page.

If you need some specific product information to get you started, we can help you.

Mylanta works well for me with bloating.

I know it's hard to see our children in pain. You already have a diagnosis. Some accept that and go gluten free immediately. Other, would like to continue with and endocopy exam. It is always a personal choice.

I hope that your time passes quickly without a lot of pain for your daughter.

Lisa

PS: I would not recommend Tums.

Julie,

I can hear the concern in your voice. I live in NC, but I am not familiar with any doctors in the Raleigh area.

My only meager suggestion is that your mother stick to the basics of foods, chicken, beef, pork, rice, potatoes, fresh veggies. Keep processed foods to a minimum.

If you mother can be comfortable with the basics, perhaps that will give her some confidence that all food is no evil. Boost and Ensure are both gluten free and may help her put on some weight.

Quaker Rice Cakes are well know for cross contamination issues. Lumberg (sp?) Rice cakes are produced on dedicated lines and she can find those at Whole Foods, or Fresh Market.

My recommendations are gear toward a Celiac diagnoses, but perhaps, you mother is facing other issues as well.

We have several members here from Raleigh. Perhaps, you might start a thread "Raleigh Celiac Doctor Needed", might generate some answers for you.

You sound like a wonderful daughter.

Hi,

I just started my gluten-free diet and notice that my big C has improved a little but now my stools are floating and never ever had this before? is this normal? has anyone else ever have this? I though floating stools are bad and a sign of malabsorption?!?!?!?!?!? Also I notice that I have swollen glands in my armpits that hurt very bad........... is this common to happen with the detox process? Has anyone else ever had swollen glands when first becoming gluten-free? Thanks Justine

It will take some time for your body to adjust. You have to remember that it took some time to cause the damage to your intestines and it will like wise, take some time to heal. Many see vast improvements in a few weeks other in many months.

Keep going with a strict gluten free diet and I am sure you will continue to improve.

I also want to add:

The Virginia Pilot, Norfolk, Virginia ran a front page in the Flavor section "What Would You Eat If You Couldn't Eat Wheat?" August 8.

Great article about Kathleen Davis who was diagnosed with Celiac and heads up the Chesapeake Celiac Chapter. It was a very accurate article and I e-mailed her and thanked her for her advocacy. It was excellent.

Here are some stats from our newspaper today:

Sitting on a park bench - 114 degreees

Sidewalk - 135 degrees

Ocean Temp - 82 degrees

Sand on the Beach - 132 degrees

Boardwalk - 119 degrees

We are suppose to have some kicker thunder storms this afternoon and Saturday a pleasant 85 degrees.

ONE MORE DAY, THEN WE GET INTO HURRICANES

I think I have a solution for this nit picking junk, I think I will only refer to the condition that keeps us from eating gluten as a "GLUTEN PROBLEM". SO IF YOU HAVE A GLUTEN PROBLEM ENTEROLAB.COM IS THE BEST PLACE TO GO. and in my opinion in the long run it is the cheapest way to go also. well unless you want to continue eating gluten until you are half dead and hospitalized and maybe they do a biobsy & find that you have villi damage, or you might just die of cancer or something else before that happens.

which really none of this applies to the orginal poster here as she has a positive biopsy & a positive blood test BUT does not have DQ2 or DQ8. So those closed minded people that say that you cannot have CELIAC DISEASE if you do not have DQ2 or DQ8 might want to tell this person that the GLUTEN PROBLEM is no big deal, just like her doctor did. in the mean time she is having health issues and her family has a history of colon problems with colonoscopies...

of course I am double DQ1 so I do not have celiac, I only have a GLTUEN PROBLEM. My mother died of colon cancer, but we think that she only had a GLUTEN PROBLEM, since we did not know about gluten then & never had her tested, she just died young... My double DQ1 sister (in the medical field) was positive via blood test for celiac, but we know that she does not have celiac because she is double DQ1 so she only has a GLUTEN PROBLEM, as also proven thru her test at enterolab.com.

My friend that tested positive via biopsy also has a GLUTEN PROBLEM because she is also double DQ1 as tested thru enterolab.com, she also has osteoporosis cause by a GLUTEN PROBLEM, & HS another auto immune disease.

How many people can afford & do get the gene test after a positive biobsy? & the few that do might be like this poster, they do not have DQ2 or DQ8 & are told that it is okay to eat gluten as that is not their problem because they do not have the gene for celiac.

Momma Goose I see that you are positive via biobsy. Do you know which genes you have?

No, I have not pursued any gene testing. A positive biopsy with total villi blunting was indication enough for a Celiac diagnosis. I have never been critical of Enterolabs, but I prefer more conventional means to diagnose by blood work, endoscopy/biopsy and positive dietary response.

Although Campbell's gluten free listing in short, they are a very respected company, IMO.

Here is a gluten free list via snail mail:

Chicken Broccoli Cheese Chunky Soup

Savory Lentil Selct Soup

Traditional Sauce - Prego - all sizes

Three Cheese Sauce - Prego- 26oz

Organic Sauces - Prego - All sized - Prego

Mushroom - Prego - 4lb. 3oz

Lower Sodium Beef Broth - 14oz

RTS beef Broth - 14.5oz

RTD Chicken Broth - 14.5 & 49.5oz

natural Goodness Chicken Broth - all sizes

Vegetable Broth - 14oz

Organic Broth - All sizes

Premium Chunk Chicken Breast in Water - all sizes

Preminum White & Dark Chunk Chicken - all sizes

Mixin' Chicken - 5oz

All Champbell's Tomato Juice

All V8 Vegetable Juices

All V8 V-Fusion Blends

All V8 Splash Blends

All Diet V8 Splash Juice Blends

Orange Creme Splash Smoothies

Peach Mango Smoothies

Stawberry Banana Smoothies

Enchelada Pace Sauces

Picante Pace Sauces

Thick & chunkdy Pace Salsa

Thick & chunky Flovored Pace Salsas

Organic Pace Picante - mild - med.

I will admit I didn't read the responses because I am in a little bit of a hurry, but if you didn't have the stool test for celiac, that is supposed to be the most accurate way of diagnosing. I had a negative blood test, but still felt bad and finally had a positive stool test. If you want to be sure I would have that done through enterolab.

It is my understanding that Enterolabs can NOT diagnose Celiac Disease.

Hello and Welcome:

You have just found yourself in the most awsome place to find out all about Celiac Disease. We have some really great folks here who are always willing to help and they give alot of their time to help new people get adjusted.

You are very welcome to post any question about ANYTHING! We can give you some starter products that are safe if you need a place to begin.

Feel free to jump right in!

Happy Birthday Manda!!!

Hope you have a VERY Special Day!

Oh, I'll be throwing it back at you all right. You just wait, Sugar !

Hubby & I had a big discussion at lunch. We'll be old pros by Monday.

Hmmmm....remember that one less cigarette is one step closer. Take one day at a time. On Monday, I want you to throw this back at me!!