Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is Gluten Free Being Celiac?

KarenLee

Recommended Posts

KarenLee Rookie
KarenLee
Posted

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. :unsure:

Thanks,

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

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 Enthusiast
Corkdarrr
Posted

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 Apprentice
dlp252
Posted
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. :unsure:

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 Collaborator
Ursa Major
Posted

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 Community Regular
mamaw
Posted

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 Rookie
KarenLee
Posted
  • Author

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. :(:angry:

Anyway, thanks again!

Karen

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Felidae Enthusiast
Felidae
Posted

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 Rising Star
CMCM
Posted

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 Collaborator
darlindeb25
Posted

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. :lol: 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 Apprentice
daffadilly
Posted

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 Rookie
KarenLee
Posted
  • Author

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 :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    3. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    4. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.