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01/12/2012

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Miranda

I'm glad that finally you can have some questions answered and take the next step forward! :)

Michael

Just a thought - any endoscopy for Celiac disease is considered conclusive *only* if positive. That is, if they see the damage they're looking for, it means for sure you've got it... but if they don't see it, it's entirely possible that they just got a clean sample, and missed the areas.

The antibody tests and the gene tests can detect different factors - might be worth trying that, if you're getting good results from a restricted diet but the biopsy is negative.

SaM

Thanks Michael. She (and I) did do the bloodtest which was also negative, but there doesn't seem to be a consensus as to how much gluten must be consumed in order for the bloodtest to be accurate after a person has been gluten free for a length of time. She has now had two celiac negative scopes and the enzyme deficiency does seem to fit as the missing puzzle piece.

Enjoyed your worm pictures! Plan to check out your blog further. I take it you are gluten free?

Mizjay

Hope you see drastic improvement! I am also a Texas mom with a daughter who has had long term digestive issues. Will be following to see what has worked for you all. Our story is similar to yours, and while gluten free living and probiotic and digestive enzyme supplements have helped my daughter, the problem remains. Hope your problem is eliminated!

SaM

Mizjay, thank you for your response. Have you ever tried specifically the reuteri strain probiotic? I found this study to be amazing: http://bit.ly/wCDL9s We started it this week and are already seeing impressive results.

Diana

I was doing some work on my own blog, and happened across yours. I was checking to see if my blog popped up on google, and yours did too. I have a 12 y/o with glucoamylase deficiency, and he was diagnosed in 2009. I didn't see a way to contact you privately, so I decided to reach out with a comment here. Please feel free to contact me- I remember well how difficult the first few months were, and I'd be happy offer any support that I can.

terri

I also have a son with glucoamylase deficiency, diagnosed in 2005, after being gluten free (and soy and corn and about a million other things free) for over a year. It was a long road to get an answer and even after being told he had a glucoamylase deficiency, the doctor didn't seem to think it was a big deal or the answer to his troubles. We had a lot of success following The Specific Carbohydrate Diet for 2 years. He *does* eat small amounts of starch these days, with the assistance of Enzymedica Digest Gold enzymes, though I try to keep his diet as 'clean' as possible.

SaM

Terri,

Thank you for commenting. It is so encouraging to hear that the SCD seemed to bring success. It gives me great hope. I have a blog post that I have started, but haven't yet finished about Digest Gold. They have made a world of difference for me!

Jennifer Willour

I stumbled across your blog tonight because our two year old little boy was just diagnosed with glucoamylase deficiency. I have so many questions and seem to get so few answers. I appreciate your testimony of your families struggles and hope that it will help our family as well.

Selena Duffer

Your story is so very similar to ours. Even the surgery date. My daughter just had upper and lower scope with over 4 biopses taken on monday 12/23/13. Just today finally recived the results, glucoamalayse defficency. I can not find helpfully I formation on the subject. Other than your blog, so thank you. I like in Weatherford and Cook Childrens is where we were sent. I have been a bit disapointed by them. I waited all day for an emailshe said would list the foods to avoid and serving sizes . It never came. My daughter is being put on a low starch diet. Thank you for sharing your story it gives me great hope for my daughters health and well being!

rose

I came across your website whilst searching for starch free recipes for my daughter and your comment about knee pain following eating starch was exactly like my daughter but she had swelling also. She was diagnosed with hlab27 related arthropathy and has been symptom free for 3 years on a starch free diet

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