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I Have My Enterolab Results


little d

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little d Enthusiast

Hello all

I finally tested myself thru Enterolab and here are my results. I am not taking this as my offical diagnoses, but it helps me to understand what is going on with me.

Fecal Antigliadin IgA 21 units Normal <10 units

Fecal Antitissue Transglutaminase IgA 13 units Normal <10 units

Qunatitive Microscopic Fecal Fat Score <300units Normal range <300

Fecal anti-casein (cow's milk) IgA antibody 12 units Normal <10

HLA - DQB 1 Molecular analysis, Allele 1 501

HLA - DQB 1 Molecular analysis, Allele 2 501

Serologic equivalent HLA - DQ 1,1 (subtype 5,5)

Ok so I have two copies of a gene that predisposes me to gluten sensitivity. Having two copies of a gluten sensitive gene means that each of my parents and all of my children will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and ther resultant immunologic gluten sensitivity may be more severe.

Ok from what I can understand on this I don't have the main gene for celiac spruce but I have 2 copies of the main gene for the sensitivity it that what I am understandingn that I got from both of my parents?

Is being gluten sensitive almost the same as have the actual disease or is it just a step down from the disease itself. Is that why if I eat the same gluten thing one time it affects not at all and I may have that same exact glutne thing and I have a full blown affect on me.

Please give my your responses

donna


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CarlaB Enthusiast

I just wanted to point out that Enterolab says that ALL genes except for DQ4 (found in Asians) are gluten intolerant genes. So, pretty much everyone will have 2 gluten intolerant or celiac genes unless they are Asian.

little d Enthusiast

No I am not asian

Nancym Enthusiast

No, not all have gluten intoelrance genes, some have celiac genes.

The DQ1 gene you have is associated with neurological problems. You probably won't find intestinal damage (although sometimes some people have it anyway, rarely) but you may have a lot of neurological symptoms like brain fog, ataxia, seizures, depression, anxiety, etc. The Gluten File has more info about this.

little d Enthusiast

I do get brain fog, tired alot, can't concentrate no energy when I am eating foods with gluten in it. And on top of that I will get either D or C but that does not hit until the next day. Sometime sooner

Ok so what am I supposed to do with this, watch what I eat and ovoid Gluten sometimes, don't worry about the idea of not eating gluten free and eat gluten, and hope for the best.

donna

CarlaB Enthusiast
No, not all have gluten intoelrance genes, some have celiac genes.

Right, that is what I said ... essentially everyone has 2 gluten intolerant or celiac genes.

If you get better gluten-free, then eat gluten-free. If your symptoms do not entirely clear up on the gluten-free diet, then start looking for what else might be wrong.

Sometimes the gluten intolerance is secondary to another condition. Mine was secondary to Lyme Disease and once I treated the Lyme, the gluten intolerance went away.

YoloGx Rookie
I do get brain fog, tired alot, can't concentrate no energy when I am eating foods with gluten in it. And on top of that I will get either D or C but that does not hit until the next day. Sometime sooner

Ok so what am I supposed to do with this, watch what I eat and ovoid Gluten sometimes, don't worry about the idea of not eating gluten free and eat gluten, and hope for the best.

donna

Honestly it sounds like you should avoid gluten period. Unless you want to get cns problems (including depression or worse and short term memory loss and later on dementia) and quite possibly glaucoma, restless leg syndrome, insomnia, weak joints as you age and the rest , not to mention poor health in general and risking becoming more allergic to your foods and general environment.


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Nancym Enthusiast

Well, if you want to feel well and lose the symptoms, I'd recommend treating this just as if you had a celiac diagnosis. There's a lot we don't know about celiac disease versus gluten intolerance but as far as I'm concerned, I'm treating them exactly alike. At least give it a good honest try for a few months and see if your symptoms clear up.

little d Enthusiast
Well, if you want to feel well and lose the symptoms, I'd recommend treating this just as if you had a celiac diagnosis. There's a lot we don't know about celiac disease versus gluten intolerance but as far as I'm concerned, I'm treating them exactly alike. At least give it a good honest try for a few months and see if your symptoms clear up.

I feel great on the Gluten free diet, It helps alot with my bathroom issues, neurological issues, and even in the bedroom area.

I totally understand that the diet helps with everything, I have even lost weight with the diet. I had gotten up to 160lbs and on my 4'11" frame that was a little too much for me to weight.

So I know that the diet helps, it is expensive but it is worth it in the long run,

donna

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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