celiac disease ?

[mg12061]

Kathleen's neurologist ran the blood test for Celiac disease. He called me with the results and told us to set up an appt. with a gastro. Dr. He said the normal is less than 20 and hers was 150. Anyone have experience with this test? It sounds pretty high is this indicitive of having celiac?
Mary Grace

[wrblack]

Yep, BTDT.
Have you read Dr. Leshin?
www.ds-health.com/celiac.htm
Charlie just had a gluten free pasta bake and gluten free garlic toast, which he loves, for dinner. He has little containers of gluten free chicken gumbo and gluten free shrimp creole in the fridge to take to school for lunch this week. And his mom just baked a batch of gluten free brownies.
Bit of a learning curve, sometimes rather inconvenient, eating out can be a bother, lots of reading labels, but nothing you can't handle.
Might want to consider follow up test for the HLA markers, or just go straight for upper endoscopy.
Let us know how it goes and if we can help. -- Bob

[Googsmom aka Jennifer]

{{{{{HUGS}}}}}} I was going to say ask Bob

[Googsmom aka Jennifer]

How has Kathleen been feeling Mary? I've been thinking about her {{{{HUGS}}}}

[CC]

HUGS ~ Have you heard any more? Update when you can PLEASE

CC~

[laurasnowbird]

Have you heard anything yet? I imagine they will schedule her for an endoscopy, and if so , be sure not to alter her diet until AFTER the test, because changing the diet changes the endoscopy results. People with celiac who adhere to a strict diet have endoscopies that look normal, which is how they can evaluate your compliance with the diet.

I know around here it can take some time to get in to see a GI doc, so you might consider doing what Bob suggested and have the blood test done to determine if she carries the markers. We did that with Ethan, hoping to find that he didn't carry the markers, and thereby sparing him the yearly celiac blood test,
and were fortunate to find that we could rule it out because he didn't have the genetic markers.

If the markers come back positive, it still doesn't mean that she has celiac, only the potential to develop it, and an endoscopy can tell if she has the active disease. There are people who have the markers who never develop symptoms of the disease.

Let us know what you hear.....

[mg12061]

Thanks for all your great advice and information. It really helps. Kathleen's still having some problems. Next week will be her period again so we'll see if the symptoms get worse again. This past week was her good week. A little belly pain in the morning. She had a couple pretty normal BM's. But now it's been 5 days and she hasn't gone. I'm waiting for the gastro Dr. to call us with an appt. I checked yesterday to make sure they got her records and they hadn't soooo I had to call back ehr PC Dr. and have them fax it again. I so hope that it won't take too long to get in. I will ask to be put on a cancelation list. I wish it was easier to diagnose! There seems to be so many issues with diagnosing this disease. I wont' to know so we can make the changes and hopefully she'll feel better! Thank again everyone...
Mary Grace

[mg12061]

We have an appointment in 2 weeks to see the Gastro Dr. I hope we can quickly get to the bottom of this. If it is indeed Celiac I hate the thought that I'm filling her full of stuff that gives her pain. She still has belly pain especially right before a BM, and it's definatly worse around the time of ehr period. Her appt. with the Gyno. is this Thursday. Maybe she can at least do some more blood work maybe hormone levels in case it isn't celiac. Thanks for all the kind words. I just can't wait for ehr to feel better. Some days she cries for hours and holds warm towels on her belly.
Mary Grace

[wrblack]

Good that you have appointment. Sounds like this is something that needs checked out. Meanwhile, you might ask a doctor, primary care, gyn, or phone call to gastro, about putting Kathleen on Miralax. We think Miralax is a miracle drug, amazing that you can just buy it at Walmart. Might relieve some of Kathleen's symptoms while you're getting tests done. I don't think it would affect any of the tests. -- Bob

[mg12061]

Bob, I tried Miralax the problem wiht that was, she did go but she couldn't control it. I didn't give her a full dose even. When she does go it doesn't seem like a "constipated" BM it's not real hard. Even after she does go the pain isn't completely gone. From what I've read there is conflicting evidence as to whether it's safe to take Miralax on a regular basis.( I know a lot of kids do) Kathleen gets LOTS of fiber in her diet. I make sure that almost anything I give her has some amount of fiber in it. In spite of this she has gone only once a week or soever since she was a baby, but the extreme pain is new and the diarhea that she has at times is new too.
Mary Grace

[Googsmom aka Jennifer]

{{{{{{{HUGS}}}}}}}}

[wrblack]

And just saw a link to an article from downunder,
www.dsansw.org.au/downloads/Down%20syndrome%20and%20coeliac%20disease%20-%20a%20tricky%20combination.pdf
Same disease in antipodeans, they just don't know how to spell. -- Bob

[mg12061]

Great article!!! Thanks...
Mary Grace