And The Saga Continues

[Worriedtodeath]

OKAY!!

for the ongoing drama, (my 19 month old had biopsy after her ped and the ped gi were convinced she had Celiac classic presentation of it) the lactose biopsy taken from the small intestine came back today. They said this was not a viewing of the villi that was only for the celiac and that it wasn't a blunting of the villa because that was the test for Celiac but she is lactose intolerant and i need to speak with the nutrionist to avoid all direct and hidden forms of diary for the next two weeks. THen I will have to "discover" her lactose tolerant level and learn how to use lactoid aids.

What is a lactose biopsy in your experience?? I thought it as a reading of the villi to see if they were blunted? Is there another special test?? I thought he had said in the consult that he would take a sample from her stomache to see if she was digesting sugars and lactose and samples from the small intestine to test for Celiac. DOes anyone know if there is a different test for lactose? it did get sent to a diferent place and took longer than the others.

FOr the kicker, I asked if this was the cause of the diaherra and she said no, this was only a part of the component causing that. I explained that we did a diary trial and it did not bother her stomache. And I'm pretty sure she was not ingesting diary other than what might be in bread before she was 12 months old. I know we didn't feed any cheese, milk, or ice cream or yogurt before she was 12 months when she had all ready stopped growing. So I am not convinced that lactose is an real issue but is just a symptom of a bigger problem.

What questions do I need to ask? I know Celiac and lactose go hand in hand. i have two kids who are lactose intolerant and they never presented with diaherra like this. In fact they have C whenever they get too much diary.

Thanks

Stacie

[Worriedtodeath]

Does anyone know if Lactose intolerant will cause on average 6-10 mucos filled mushy or green clear liquid diapers? everything I am reading says it happens after eating things with diary. So if you are eating lots of diary direct and hidden would it cause you to have constant diaherra?? I'm fairly positive even with hidden diary she hasn't been ingesting that much on a daily basis to cause months of diaherra. Especially when we did FOOD TRIALS AND SHE PASSED THE DIARY TRIAL. UGH!!

Thanks

Stacie

[nora-n]

I had a biopsy like that too, and they tested the sample (same as celiac biopsy sample, because the lactase enzyme is made in the tips of the villi) for the enzzzyme. I was not lacking the enzyme....but I do not tolerate any tracs of milk, it feels like my intestines get swollen and I get constipated for a day or so. I rreact to the protein but I have no positive test for that.

So, when people reacct to milk or are lactose intolerant without the gene for lactose intolerance, celiac or something is suspected. But one cannot be sure of it, just suspicious.

Children are supposed to have the lactase enzyme, and western europeans usually keep the ability to make the lactase enzyme. They should have the lactase enzyme. There is a gene test to test for if one should have the lactase enzyme but it is not very accurate.

Antibodies to casein is something different, this is another test. My daughter happened to test positive to casein from milk. I guess I have these too.

nora

[Darn210]

The villi in the small intestine produce the enzyme to process lactose. It is a different kind of test that determines if the intestine is producing the enzyme. I do believe there are different levels of lactose intolerance. My daughter's test showed what the normal range should be and she tested below normal but did appear to have produced some of the enzyme. Our intolerance was believed to be a part of her celiac diagnosis and she was on lactaid milk and lactaid supplements for about 6 weeks after she went gluten-free. I would say that she never had any cramping or diarhhea that is supposedly the main symptoms. My pediatrician said that most children (barring other medical issues/allergies) are OK with lactose until about the age of 5. This would be the most common age that they might lose the enzyme production. (IMO, that's because evolutionary-wise, that was when children were weaned. Drinking cow's milk is relatively new in human history.)

Did they check any of the other sugar processing? For my daughter, they checked other sugars and she was down across the board. She did NOT have villi damage but she was loosing sugar processing so that was an indication of the beginning or hidden damage (the pedGI's opinion).

[Worriedtodeath]

They tested her for various sugars and took biopsies from throat, stomache, and small intestine.

[Worriedtodeath]

Well!!!!

Hubby is really from Mars. He talked to the dr today who told him point blank keep the baby on wheat and remove all traces of diary from her diet. Wheat is not her problem. IN two weeks, she should be perfectly fine and well on the track of recovery. call back if not.

I just bought two weeks of all gluten free food (normal stuff not speciality stuff) and now I have to adapt all of that to be milk/diary free and contain wheat for the baby. the oldest son and I are staying gluten free because it has made a difference for us and the middle one wants to be gluten free except he would like an oreo.

THe big problem is why wouldn't we have picked up on the lactose the first time around at 12 months or the second time around during the diary trial. I told my husband we would do two weeks and then that is it!!!!!! If she is still crapping constantly (not if WHEN she is) then she is going gluten free regardless of the oh same lame ped gi. IN 7 days of gluten free (she's had milk and diary) she has dropped to 2-3 movements a day and her undigested food is from like a day ago and not the last meal.

Stacie

who is leaving in a few minutes to buy all things milk free and gluten heavy against all better judgement!!!!!!

[Worriedtodeath]

Update!

5 days of wheat and no lactose she is pooping several times a day. The nutrionist in the office told me to take her off of wheat and keep her diary free since she so obviously has a wheat allergy. They now want me to get her back to normal, go wheat free not gluten free, and then introduce the barley and rye. I asked if those cause her problems and her response was then she obviously has mutliple allergies. ?????? My allergist said a wheat allergy wouldn't take 2-3 weeks to show up and cause problems and that's why we moved onto the ped ig. hopefully her pathology reports will be here soon and i can see just what they really said.

Stacie