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JASON

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JASON Rookie

I DON'T UNDERSTAND THE BLOOD TESTS BUT AFTER TWO BODERLINE TEST RESULTS AND WITH A SISTER WITH CELIAC MY DOCTOR BUT ME ON A GLUTEN-FREE DIET. THERE ARE TIMES WHEN I DO FEEL REALLY BAD BUT NOT ALWAYS. I AM WORRIED ABOUT MY DOCTORS EXPERIENCE WITH CELIAC EVEN THOUGH I WENT TO HIM WITH MY PROBLEMS. I WILL GIVE THIS A TRY EVEN THOUGH THE INFORMATION I RECIEVED FROM MY DIEITITIAN IS ALREADY WRONG. SHE GAVE ME A SAFE FOOD LIST ON IT THAT SAID ALL DORIOTOS ARE SAFE EXCEPT TACO AND MY FIRST CHOICE WAS NACHO AFTER EATING I LOOKED AT THE INGREDIENTS AND SAW THAT IT CONTAINED WHEAT. NICE START. WOULD YOU AGREE WITH MY DOCTOR OR SHOULD I GET ANOTHER OPINION


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daffadilly Apprentice

If you have a sister with Celiac your chances are greatly increased that you could have celiac. Do you have symptoms? You can get a gene test thru Enterolab & they also test for gluten sensitivity & dairy & I think a couple of other things. I highly recommend them if you want any additional proof for yourself. each person has to make that decision as to how much proof they want. For some, improvement on the diet is all the proof that they need...

LKelly8 Rookie

Hi Jason! :)

{AOL voice}Welcome, you have celiac disease! :P

There's no such thing as "borderline" celiac, you have it or you don't. From your blood results, your family history (family members of a celiac have a 1 in 10 chance, as opposed to the 1 in 100 of most people) and your doctor's reaction, I'd say you have celiac disease. Sometimes celiac doesn't cause stomach symptoms, sometimes it doesn't cause any symptoms at all - until it's too late and you have cancer or another autoimmune disorder or a whole bunch of other unpleasant stuff.

Honestly, I wish I had had your doctor! He sounds proactive and informed. If your still concerned about being an "almost celiac", talk to your doctor. Ask him what he meant by "borderline" and how he decided on celiac as a diagnosis.

Dieticians are notorious for being out of date on the gluten-free diet. Thank goodness for sites like this and for local celiac support groups. How long has your sister been gluten-free? Is there a support group in your area?

Rusla Enthusiast

Being Celiac is like being pregnant, you are or you aren't pregnant or celiac. There is not borderline pregnancies nor is there borderline Celiac disease. So as you have already been told, welcome to the world of Celiac.

AndreaB Contributor

Welcome,

If you want further proof I would recommend Enterolab. Click Open Original Shared Link for their site.

Your doctor sounds like a good one.

Not everyone has symtpoms. My family tested through enterolab and due to our numbers being lower I assume we would have tested negative by blood work. We didn't have any symptoms untile after we went gluten free. If we had something with cross contamination and/or mistakes by my mother, we would react. You'll find the longer you are gluten free the more sensitive you will become.

mouse Enthusiast

You have it. I wish I had had your doctor many years ago. You cannot have a false positive no matter how low the number is. It just means that the damage has probably not gotten so extensive. How lucky you are. Embrace the diet and that means being careful of cross contamination. You might see some changes in your health that you did not realize were from gluten. There are members on here that had no intestinal issues, but found after going on the diet, that other health things cleared up or got better after going gluten-free.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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