New To Forum, Blood Work Results Received Yesterday

[scott-in-pa]

Hi everyone,

I am brand new to this forum as I have just received news last evening that my blood work numbers were all "Strong positives" for Celiac. I have an endoscopy scheduled ten days from now to confirm. My G.I. specialist did not disclose my specific numbers-- she wants to be sure that the biopsy results are not spoiled by me jumping the gun and going gluten free before the procedure. I am in no rush to jump into gluten-free living just yet! I have been suffering with bouts of D and weight loss (about 12 pounds in 8 weeks). I have also had some numbness in my hands and feet and general fatigue (I also have a 9 month old son and 4 1/2 year old son--who exhaust me!) Like many in the forum, I have been going crazy worrying about my diagnosis. Should I rest assured that this is the true cause of things? I should also note that my mother has had ulcerative colitis and Crohns for years and was diagnosed 18 years ago with primary sclerosing cholangitis--she's doing fine and the meds seem to be working. My question is, is my probable diagnosis with Celiac at all related to her G.I. problems? Just wondering...They're also doing a colonoscopy at the same time as my endoscopy to make sure there are no signs of other G.I. issues. Should my boys be tested too? My older son seems to have diarrhea quite a bit, but he still drinks milk often...

I appreciate repsonses. Thanks in advance for your help!

[Ursa Major]

Hi, and welcome to these boards. There is virtually no such a thing as a false positive blood test result. So, even if your biopsy should be negative (really, they are hit and miss), I would assume you have celiac disease and start the gluten-free diet after the biopsy no matter what (without waiting for those results).

I think it can be assumed that your mother's primary problem is celiac disease, since it is genetic and you inherited it from somebody. I imagine that if she would go gluten-free she would likely feel much better. Besides the fact that all bowel diseases respond favourably to a gluten-free diet anyway, even if it isn't celiac disease.

It is never normal to have diarrhea more than twice a year. If your son has frequent bouts of diarrhea, that is a red flag for sure. He could be gluten intolerant, or dairy intolerant or both. Yes, it is wise to have all close family members tested as well.

Just be aware that the blood tests are not that reliable and yield many false negatives. If your children's tests are negative, you should still try the gluten-free diet to see if it makes a difference.

Also, you need to eliminate all dairy and soy for a while when starting the gluten-free diet, because those can hinder healing.

[blueeyedmanda]

  scott_in_pa said:

Hi everyone,

I am brand new to this forum as I have just received news last evening that my blood work numbers were all "Strong positives" for Celiac. I have an endoscopy scheduled ten days from now to confirm. My G.I. specialist did not disclose my specific numbers-- she wants to be sure that the biopsy results are not spoiled by me jumping the gun and going gluten free before the procedure. I am in no rush to jump into gluten-free living just yet! I have been suffering with bouts of D and weight loss (about 12 pounds in 8 weeks). I have also had some numbness in my hands and feet and general fatigue (I also have a 9 month old son and 4 1/2 year old son--who exhaust me!) Like many in the forum, I have been going crazy worrying about my diagnosis. Should I rest assured that this is the true cause of things? I should also note that my mother has had ulcerative colitis and Crohns for years and was diagnosed 18 years ago with primary sclerosing cholangitis--she's doing fine and the meds seem to be working. My question is, is my probable diagnosis with Celiac at all related to her G.I. problems? Just wondering...They're also doing a colonoscopy at the same time as my endoscopy to make sure there are no signs of other G.I. issues. Should my boys be tested too? My older son seems to have diarrhea quite a bit, but he still drinks milk often...

I appreciate repsonses. Thanks in advance for your help!

Hi and Welcome to the board! I am also from PA. I am not sure if you have one in the area, but, Wegmans grocery store is great for celiacs and gluten free shopping.

[Gemini]

  Quote

Also, you need to eliminate all dairy and soy for a while when starting the gluten-free diet, because those can hinder healing.

That may be extreme advice for a new Celiac. I did not eliminate those two at all and healed just fine. If a person is still having issues after a month or so gluten-free, then I might advise eliminating them, one at a time, so you can be sure which one is the offender. Eliminating all of them at once might complicate matters.

A little disturbing is the fact your GI would not disclose numbers.....if you make the decision to wait for an endo, that's fine but a doctor should give a patient the choice and not withhold pertinent test results. If I had waited for an endoscopy, I would have ended up in the hospital. A positive blood test is a diagnosis for Celiac and response to a gluten-free diet will clinch it. You have all the symptoms I did so you can rest assured with the blood work and symptoms, you are Celiac. Don't worry...the diet is not difficult, once you master the basics and soon will become second nature.

You'll be amazed at how good you will feel!

[happygirl]

Welcome to the board!

Request a copy of your bloowork, so that you can see what tests were run, what your results were, and what the reference ranges are.

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"The disease is patchy, this combined with the fact that all biopsy pieces may not be oriented sufficiently to assess the crypt to villous ratio means that at least 4 to 6 biopsy pieces need to be taken. Biopsy of the descending duodenum is sufficient"

Discuss this with your doctor to ensure that enough biopsies are taken.

If you have your child tested (which you will need to if you are diagnosed, along with all first degree relatives), the bloodwork you'll need is:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Good luck!

[scott-in-pa]

Thanks for all the excellent advice!!

I should have mentioned that my G.I specialist phoned me to tell me that she looked at my blood work results and that prompted her to contact me to make sure that I added an endoscopy to my colonoscopy appointment. I didn't have a consultation with her yet to discuss my lab results. I do not think she was not being secretive, just need to let me know so I could add the procedure to my appointment.