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Worriedtodeath

Baby's Biopsy Back

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Finally got the biopsy report in today. it has little info and makes me wonder if they didn't do everything I have heard needs to be done on little ones in the early stages of Celiac disease. She was 19 months 9 days and had been on wheat 96 days. DOes anyone out there know??

Here's the report:

sample a -esophagus - five gray tissues - alcian blue/pas stain ordered sections show strips and fragments of benign epithelium with orderly maturation. Active inflammation and ulceration are not seen. Dysplastic and neoplastic changers are not seen. INcreased intraepithelial eosinophils are not seen. Glandular elements, including goblet cells are not seen. deeper section with an alcianblue/pas stain at ph 2.5 does not demonstrate acid mucin of inetstinal metaplasia or fungal organisms.

sample b - antrum - 3 tan tissues H pylori stain ordered - Sections show fragments of benign gastric mucosa containing a few lymphocytes and plasma cells within the lamina propria. Active inflammation and ulceration are not seen. Dysplastic and neoplastic changes not seen. A deeper section with a warthin starry stain does not demonstrate Helicobacter organisms.

Sample c - Duodenum 6 tan tissues -sections show fragments of benign duodenal mucosa without evidence of villous blunting or crypt hyperplasia. the vili to crypt ratio is 4:1 with scattered lymphocytes and plasma cells within the lamina propria. Increased intraepithelial lymphocytes are not seen.. Active inflammation and ulceration is not seen. Dysplastic and neoplastic changes are not seen. Brunner's glands are present.

I thought there should be numbers of IELs and Iels staining performed to determine the actual number.

Her disaccharidase test shows

lactase 7.6 range 24.5 +>- 8.0 abnormal <15.00

sucrase 35.6 range 54.4 +>- 25.4 abnormal < 25.00

maltase 138.5 range 160.8 +>- 62.8 abnormal < 100.00

palatinase 5.1 range 11.1 +>- 6.5 abnormal < 5.0

Thanks

Stacie

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You say she was on wheat for 96 days, was she gluten free before that? If so how did she react to the diet? Did you see symptoms come back on her 96 day challenge? The symptoms would not always be just GI symptoms, how is her mood, sleep, etc is also important. How she reacts when you add gluten back in is the most telling and that is more diagnsotic than the tests on little ones.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Everything went bad on gluten and everything has improved off it. DIet wise it is a positive for Celiac. It's just the gi is adamant that Celiac is not her problem because the bippsy was neg and he wants us to try various gluten grains until we find one that doesn't upset her tummy. :o We are going to the ped to review everything since the gi won't even do a followup since her problem is not a "gi" problem just food intolerances. Hubby is more of the mindset to get her well and back to the right growth curve and then reintroudce stuff and see what happens. I'm more of declaring her Celiac and running with it.

I was just wondering if the pathologist had even run all the approiate biopsy test to determine early Celiac signs instead of severe damage. IF not, I'm sure the ped will be glad to try to get the samples if there any left sent elsewhere for a better reading from more expierenced and knowledgable paths.

Stacie

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It sounds like he is recognizing that she has an intolerance but that it is not full blown celiac, yet. I would tend to side with you and want to prevent her from developing full blown celiac. She has had a negative effect from adding it back in and that in itself is telling you her body doesn't want it. It has to be so hard on you to have made her sick for 3 months and still not really have an answer from the GI doctor. I am sorry you had to go through this. You may want to follow the diet until she is old enough to tell you when something hurts. This will also give her time to gain some ground with growth and you can always challenge later. When you do challenge later I would do it when DH has a vacation so he can clearly see the mood effects when they occur. Many little ones do a Jekell and Hyde on gluten, heck lots of us adults do to for that matter.

I wish you the best and hope she is gaining ground soon and feeling better.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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She's doing great. SHe's up a couple of pounds and has at last outgrown all the 12 month clothes and certain types of 18 month clothes. I think she has grown about 1 1/2 inches since starting Gluten-free Casein-free. Compared to where she should be she's only 6 lbs under weight and about 3 inches below height. Her moods are great and she is just a delight. Because she put Mr. Hide to shame with her behaviour. THe ped said she will be content if she will grow to her height curve and not fall any further on the weight. She doesn't expect her to gain her weight back to "normal" given the diet is typically low carb and we are careful about adding in gluten-free grains more than a couple of times a week right now. And she is so active right now that gaining weight is much harder than maintaining it.

Funny you should mention full blown celiac. THat's the term the gi used when informing us that if she continued having problems we could rescope and retest and see if she had developed "full BLown" Celiac in a year or so. Like being a little pregnant. We've been working toward some type of dx since Jan and finally realized he isn't going to give us one and now realize the pathologist may not have done the right stuff or even looked at all the samples. THat sucks.

Just sounds stupid to not prevent a disease if you know you could.

Stacie

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