Is Gluten Free Being Celiac?

[KarenLee]

I am sorry, I bet this was answered somewhere, but my family is being insensitive to my going gluten free. If Enterolab test were pos., and I have gluten sensitive genes, but my blood is neg., then do I have Celiac? The blood tested antibodies for Celiac-none were found. I am confused. Maybe my family will accept it all more if I did say I have Celiac. I apologize if that sounds insensitive.

Thanks,

[Guest nini]

In my personal (humble) opinion... Enterolab is extremely valid, and Gluten Intolerance and Celiac are the same thing, the only difference is that Celiac is "confirmed damage" either way your body is reacting to gluten, either way you need to be off of it, so it wouldn't offend me in the least if you wanted to tell your family that YES you have Celiac and they should very seriously consider having themselves tested (by Enterolab preferably) as most of the conventional tests still miss too many early stage Celiacs.

[Corkdarrr]

I tend to use the two interchangably.

My Enterolab gene tests showed two gluten sensitive genes but no celiac genes...but from what I understand that doesn't mean that there isn't damage being done when I consume gluten.

Maybe someone else can explain it better? Either way, same difference as far as I'm concerned!

Courtney

EDIT:: that doesn't mean there isn't damage being done when I consume gluten, or that there won't be damage in teh future if I chose to not follow a gluten-free diet. Perhaps gluten intolerance is the first stages of celiac before serious damage occurs?

[dlp252]

I am sorry, I bet this was answered somewhere, but my family is being insensitive to my going gluten free. If Enterolab test were pos., and I have gluten sensitive genes, but my blood is neg., then do I have Celiac? The blood tested antibodies for Celiac-none were found. I am confused. Maybe my family will accept it all more if I did say I have Celiac. I apologize if that sounds insensitive.

Thanks,

Family can be tough! Mine were very supportive fortunately and didn't need much to support my gluten-freeness. I have a celiac gene and a gluten sensitivity gene, but because my biopsy/blood tests were negative, I do not have a diagnosis of celiac. Now, my blood test and biopsy was done SIX months AFTER I went gluten-free AND before that I had been on a low carb diet, so hadn't been eating large quantities of gluten...probably just enough to keep me feeling bad, but not enough to have widespread damage. (That's my theory anyway.) Had you been eating a regular gluten-filled diet before your testing was done (the blood and biopsy)? If not, that may have affected the results. I'm sorry because I don't think I actually answered your question.

[Ursa Major]

Karen, all your blood tests prove is, that the damage to your villi isn't pronounced enough yet to produce enough antibodies to show up in your blood. And that is a good thing. On the other hand, people who have the gluten sensitivity genes rather than the celiac disease genes will often have more nervous system damage and psychological symptoms, rather than gastrointestinal problems.

No matter what your family says, you obviously are intolerant to gluten and casein and need to completely eliminate them from your diet in order to be healthy. Otherwise you'll likely end up with other autoimmune diseases, depression, maybe even cancer down the road, and many other things.

[mamaw]

Hi Karenlee

I think you will hear that alot of families just don't get it... I have siblings that I know have this but they will not even consider a bloodtest. All I hear is your nuts & its too expensive to eat like that. I must be nuts...

Well I too was told I was not celiac( full-blown) because I has no villi damage. My medical doctor told me I did not have to do the diet-- period. But I was so sick I did it anyway with terrific results. I think there is a long way to go in the US regarding this illness. It is improving as we speak .....Even after doing this & looking & feeling better I can't get my siblings to budge.. So I just let them do their thing & I do mine.

I suggest that you do what's best for you & your health. DO you feel better on the diet? to me that is what counts most.

I'm glad I didn't have the villi damage but my daughter & her 1 son got tested & they both have villi damage.....the other son turned out like me, so now there are four of us gluten-free...

Best of luck to you...........I thinks as more get dx'd family members may get bit in the butt with their remarks.

mamaw

[KarenLee]

Thanks a lot. that helps me feel better. It just made me cry when my DH said that I don't even have the disease and how in the world could a speck of wheat hurt me? He was in big trouble. Of course the kids were listening in. this was all after buying a new toaster just for me.

Anyway, thanks again!

Karen

[Felidae]

There are many false negatives when it comes to celiac antibody blood tests. Some people have negative blood tests and positive enoscopy results. Also, if you feel better gluten-free then your body is telling you something. Don't be discouraged, in time hopefully they'll learn to understand.

[CMCM]

Karen....I don't know what to say about insensitive family members, but all I can say is that in general, with something like celiac which is not so obvious on the outside (like something visible would be), it's hard for people to understand. Heck, my mom is celiac....it nearly killed her before one single sharp doctor figured it out 40 years ago just in the nick of time before she died of malabsorption....after going thru all that, even SHE doesn't want to believe I have it because I don't react quite the same way as her (she gets violently ill if she gets even a smidgen of gluten, but I don't react that severely).

I did Enterolab testing to see what was what with me, and prior to the Enterolab testing, maybe 4 years ago, I had a basic blood test which showed nothing for gluten. However, I have always sensed that I had problems with wheat things, and while I wasn't gluten free I didn't eat much, or very often, so perhaps that's why nothing showed up in a standard test.

It's hard to know how seriously to take test results, too. For myself, I can't know if I actually have intestinal damage (at which point it would be officially designated as celiac), but I do know that I feel wonderful with no gluten in my diet, and after a period of no gluten, I can have a bit here and there but before long I start getting reactions again, so I KNOW I should probably never have it again.

[darlindeb25]

It was explained to me in this way: Celiac Disease is the final stages of Gluten Intolerance--meaning, by the time you can be diagnosed as a celiac, tremondous damage has already been done. Being gluten intolerant is just as horrendous as having celiac disease if left untreated. If you are found to be gluten intolerant, than you must go gluten free just the same as being a full blown celiac. Maybe if you explain it to them in this way: You can be diagnosed as a Type II diabetic and need to cut way back on sugars and starches, along with exercise and medication--yet if you don't cut back and refuse medication, you will eventually need shots the same as a Type I diabetic.

Explain to them that a gluten intolerant person has a 60% higher stomach cancer rate while consuming gluten. I explain to people how gluten can make us ill in this way: If you take a piece of bread and break it into 1000 crumbs, just one crumb is all it takes to make a gluten intolerant person ill. I tell them that breathing it and touching it can make us ill. Sometimes if you can give them "official" paperwork to read, it helps. Print articles off the internet. Dr. Green's new book is good too. He explains things a little differently, he tells: Celiac is like a child with a scraped knee. If the child is careful and takes good care of his/her knee, it will heal, but if he/she keeps falling on it, it will never heal and get much worse. Feeding a gluten intolerant person gluten is keeping the wound from healing!

I truly do not have much trouble with my family. My brother thinks we are all nuts and wants to make us a pot of barley soup, to cure what ails us! Some of my kids still do not totally understand what contains gluten, but they try. My oldest called me from the grocery store one day and asked me what kind of rolls do not contain gluten. In the beginning, he thought I was just on another diet--5 yrs later, they realize this is a lifestyle. Family dinners always include lots of gluten free items considering my sister and father are celiacs too. Family can come around, if they want too.

[daffadilly]

Just order your smart hubby the book "dangerous Grains" by James Braly, M.D. and Ron Hoggan, M.A. $10.00 at amazon .com

I would also print out this thread for his leisure reading. If you have the money you could have his genes tested at Enterolab and the genes of your children. I have found that these DQ1 genes that we have are very smart and are very attracted to other people that have the genes, they marry, & have kids that have two genes.

I have two DQ1 genes & my grandson has two DQ1 genes!!!! & you will find out soon enough that having two DQ1's is not a good thing, your husband should be counting his lucky stars that you are smart enough to have found this out early before years of MAJOR ILLNESS and a decline into dementia to go with it.

Oh, & a negative blood test does not mean anything except that the test was negative, it could be that the lab messed up, or that you were not eating enough gluten or that they did not even run the right tests. Did they run all four tests? or is it five??? People do have negative blood tests and postive biopsy.

I also suggest that you think about it and do your family a favor and make your household gluten free, those that do not test positive thru enterolab, can eat wheat when out of the house. The gluten free diet if done correctly is a very healthy diet...

[KarenLee]

THis is all such great information and advice, thanks so much. I don't think I could go gluten-free without this support. (Well, I could, but it would SO much more difficult, with much more tears!) I am planning on buying Dr. Green's and Braly's books today, I hope it is at one of the "regular" book stores...

Thanks again