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Mamato2boys

Gi Doctor Anti-enterolab

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I'll try to shorten this very long story as much as possible. My almost three year old son has a long history of allergies to eggs & milk. He also has a very long history of chronic diarrhea - basically starting when he was about a year old. His growth has always been just fine, and he's always met or exceeded milestones. I gave up on allergists who claimed he cleared his allergies and that he should start getting the flu shot again (which I suspect is what triggered his egg allergy to begin with), and didn't think he was reacting to soy milk (he was). I then took him to see a GI doctor whom I work with and respect. She did a serum celiac panel (negative), a stool fat test (also negative) and suggested an intestinal biopsy, which I refused. At this point my son was already fearful of doctors, and I didn't see the point in putting him through a painful, invasive procedure that had such a high error rate. I asked her opinion on EnteroLab and she was pretty non-committal, just said I should 'be careful' because some labs are unscrupulous and will solicit parents of autistic kids, etc. She was also pretty negative about the celiac diet. Well, I've been reading what everyone has said about EnteroLab and decided I'd go ahead and give them a shot. After all - they have absolutely nothing to gain by saying he had positive test results. In fact, it would be just as easy for them to say he had negative test results if they were unscrupulous. I emailed her twice before going to EnteroLab, asking what course of action we should take, and those emails went unanswered. She actually said to me "some kids never have a normal stool and we don't know why." I can't believe that chronic diarrhea would EVER be considered ok to a doctor !! I had a conversation with her a little while ago where I essentially got treated like an overly-paranoid parent, was told that EnteroLab was a scam. When I told her that the genetic testing showed he had two genes for gluten sensitivity, she went on to say tests like that only work in the reverse - that no genes mean you don't have gluten sensitivity. That you can have the genes and not be gluten sensitive. Well ok - but if you have the genes and chronic diarrhea....don't you think it could be POSSIBLE ??? :angry: I really resented being treated like I'm some ignorant weirdo, or like a nuisance parent. I work in the medical field - I've witnessed nuisance parents - and I AM NOT ONE OF THEM !!!


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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Dr. Fine has not yet published the results of his studies, his methods are patented so no one else is doing them. It is not widely accepted by the medical community because of that. I wouldn't worry about it. If your son does fine gluten-free, then you don't need to see the GI again anyway. I am living with that myself! Dietary response will be respected once you find out how he responds to the diet.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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She actually said to me "some kids never have a normal stool and we don't know why."

Unbelieveable <_<

You are certainly not ignorant :) From what I've read here, the blood testing is not as reliable in young children.

Is he on the gluten-free diet yet? If it were me, I'd put him on the diet and let those results speak for themselves. I also agree not to put him through the biopsy.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Carla is right. Forget about your doctor and go with what you've find out through enterolab. If he responds well to the gluten-free diet and has two genes predisposing him to gluten sensitivity, you know what the truth is. And you're right, it should NEVER be considered normal to have constant diarrhea.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I just wanted to add, I also have two gluten sensitive genes and I'm VERY sensitive to gluten. Your doc is right in that you can have the gene and never develop the sensitivity, but he's wrong in that if someone has the gene and chronic d, that all is okay. In that case, they should at least try dietary response. It seems that more docs accept dietary response than Enterolab.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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mamato2boys,

ditto to the always sound advice offered by Carla, Patti, and Ursula.

good for you for being a good mom! your children are lucky to have a mother who is willing to stick up for her children. unfortunately, your story is all too familiar. I have been told the same as you, as has my mom/sister. So it is most definitely not you. I learned at age 22 that I had to be my own advocate, otherwise I was never going to get better. You are your child's ONLY advocate.

I was dx with traditional blood tests but some of my other intolerances have been identified through enterolab. Eliminating these foods has helped me GREATLY, including things that they don't test for. I don't care what they want to call it...Celiac, gluten intolerance, gluten allergy, gluten sensitivity, or crazy woman who won't eat gluten (and insert all other foods in there)....I know that gluten (and, for me, other foods) make me sick.

The best result is your son's health. If he improves on the diet, then he improves, bottom line. As you are learning, you don't need a medical diagnosis to feel better. Now, granted, it certainly does make life easier sometimes, but the best reward will having your son healthy, no matter what route you take.

Good luck and good for you for sticking to your guns!

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My daughter's pedi GI's nurse also said she didn't think the gluten free diet was necessary for my daughter. Her blood tests were always negative. She didn't mention Enterolab by name but she said that there was an internet lab out there doing stool tests which they thought were inaccurate. She thinks it is unneccessary even though my daughter has always said she felt better gluten-free, used to have constant stomach aches, and my grandmother had biopsy confirmed celiac. After speaking with the nurse, I have not even taken my daughter back to the doctor. Maybe the doctor would feel differently, but I'm not sure what I really need her for anyway. I don't mean to be critical of doctors, but I think Enterolab is just not something they know about from their own experience and it goes against what they have been taught. But it doesn't mean they are right. The doctor's next step for my daughter would be the endoscopy so if more problems come up, we can always do that later. Just do what you think is best for your child.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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Sounds like you're in the same boat as me. My son's ped. was all for the idea of Enterolab testing - until she consulted with the GI who told her that there's no such thing as a reliable stool test. I actually did a quick search online and found an article that supports her position, but my own personal opinion is that if a diet or other regimen relieves whatever symptoms you have, then that's fact enough that something's awry. We're waiting on the blood gene panel, but in the meantime Izak's been gluten-free for months now and is doing great (his symptom too was chronic diarrhea - no weight or malnutrition issues, although I suspect he may be developing a dairy allergy & we've switched to soy milk). I also wouldn't and will not have the biopsy - from everything I read, it's incredibly unrelaible in children and like I said, the diet is working! So who needs to be cutting and biopsying when I already have a solution. Anyway, I feel for you...and I know exactly what you mean about being perceived as the 'nuisance' parent or jjust 'weird'. Sometimes I feel like I'm the poop patrol, but whatever. I agree with the other posters' suggestion - try the gluten-free diet & see what happens. It definitely can't hurt.

-E


DS1&only(so far!): born 7/12/05 * chronic diarrhea from age 5 mos. * WF/gluten-free from age 9 mos. * NO MORE LOOSE POOP!

10/19/2006 Tested positive for DQ2 Heterodimer (HLA DQA1*05/DQB1*02) and negative for HLA DQ8. Have followup appt. with ped. GI in December!

Update: Told GI I was unwilling to do serum tests (give him gluten). GI said if what I was doing works, then keep on keepin' on! Happy, healthy & nearly two now! Occasional rash & loose poop from drinking bathwater, so switching to all gluten-free beauty/personal products.

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Thank you all so much for the kind words and support ! I loved the "poop patrol" characterization ! LOL !! That's exactly how I feel oftentimes.

In stark contrast to the GI, we have a wonderful pediatrician. He wasn't sure about EnteroLab simply because he really doesn't have much experience with them, but he definitely encouraged us to try the diet to see if it works and is very supportive. He has apologized to me more than once for not knowing more about food allergies and celiac disease. I also have a 7 1/2 week old son, and I'm betting odds are pretty good he at least has one gene for gluten sensitivity, if not two. All of us are going to be doing a gluten-free diet, and my oldest son and I will be doing a CF diet as well. I haven't started it full-force yet, but will be phasing it in as we finish up the taboo groceries (which won't take long as I haven't been grocery shopping in a little while, lol).

That GI doctor can consider herself fired.


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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In stark contrast to the GI, we have a wonderful pediatrician. He wasn't sure about EnteroLab simply because he really doesn't have much experience with them, but he definitely encouraged us to try the diet to see if it works and is very supportive. He has apologized to me more than once for not knowing more about food allergies and celiac disease. I also have a 7 1/2 week old son, and I'm betting odds are pretty good he at least has one gene for gluten sensitivity, if not two. All of us are going to be doing a gluten-free diet, and my oldest son and I will be doing a CF diet as well.

That's great that your ped. is supportive of the diet. If I still had our old ped. (before we moved) then I'm sure she would have been fine with it too.

My infant son (now 10 months) broke out with eczema when he was a little over 2 months old. That's how we started on the journey that led us to celiac/gluten sensitivity. See my sig. We used enterolab. I emailed the results to the doctors but never heard back. We are all happy and gluten-free/sf/cf. My kids are having a harder time going back to dairy free (CF) after being on it for a couple months. We were vegan before. My mom is not helping in that respect. We just had the kids tested for allergies so I'll be curious as to what that unfolds. My infant son's eczema cleared up with me going gluten and soy free BTW.

Welcom to the board. You've come to the right place. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Guest nini

I had an opportunity this past weekend to speak with a Pediatric GI that specializes in Celiac (he marched with our support group in a local parade for the second year in a row) and I spoke with him last year too... My daughter's blood tests were negative (or not positive) and her GI tried to tell me it was just IBS, but as I've stated over and over on this board, my daughter's results on the gluten-free diet were nothing short of miraculous! I have a very healthy happy six year old with normal poops and no tummy issues, her height and weight are perfect, BMI is perfect, heart & blood pressure perfect, iron and blood sugars perfect, shall I go on? anyway, This Dr. said that the proof is in her response to the diet, and as long as she's gluten-free and stays gluten-free and stays healthy, there is no reason to take her back to a GI...

just wanted to share that... anyway, I got the same advice from a nationally renowned Celiac expert in regards to my daughter. Positive dietary response is absolutely a valid diagnostic tool, and until the medical community as a whole recognizes this, we parents do have an uphill battle to keep our kids healthy. I really don't care if anyone thinks I'm crazy for keeping my child on a gluten-free diet without positive bloodwork... (besides, my daughter refuses to eat gluten anyway because she doesn't like the way it makes her feel)... the proof is in her current state of health and how well she is doing. (knock wood)...

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My GI doubts the reliability of Enterolab too. We ended up doing a diet trial after inconclusive blood tests and 2 negative endoscopies. That was all the proof we needed. I too was told that my son just has toddler's diarrhea. I told them that all that means is they have no clue what's causing it. They couldn't argue with that. good luck with everything.


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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She actually said to me "some kids never have a normal stool and we don't know why." I can't believe that chronic diarrhea would EVER be considered ok to a doctor !!

That's exactly what my daughter's pediatrician said to me, and she has had weird poo basically all her life. She tested as being gluten sensitive thru Enterolab.

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My GI doubts the reliability of Enterolab too. We ended up doing a diet trial after inconclusive blood tests and 2 negative endoscopies. That was all the proof we needed. I too was told that my son just has toddler's diarrhea. I told them that all that means is they have no clue what's causing it. They couldn't argue with that. good luck with everything.

"Toddler's diarrhea" ??? :blink: Sounds like a BS diagnosis if you ask me - about as bad as the "some kids never have normal stools and we don't know why" line I got.


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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"Toddler's diarrhea" ??? :blink: Sounds like a BS diagnosis if you ask me - about as bad as the "some kids never have normal stools and we don't know why" line I got.

I know!!! When I was searching for answers way abck in the beginning, I came across some info on the web about 'non-specific toddler's diarrhea' where I think it said something like "A toddler who is thriving and cheerful despite having diarrhea may have chronic nonspecific diarrhea of childhood."

I'm sorry, Chronic nonspecific diarrhea of childhood? Since when did diarrhea become a rite of passage? Especially when it seems (at least in our case) to be easily controlled by diet. Maybe it's just me, but I just can't believe that something like diarrhea can be so random.

You know, I used to feel weird gaging my days by what kind of poop my son had (solid/brown = yay!, liquid/yellow = uh-oh), but now that I know that yay! days = gluten-free days, I feel so much better about my vigilance in trying to figure out what the heck was going on with my son's butt.

-Proud Poop Patrolwoman, E


DS1&only(so far!): born 7/12/05 * chronic diarrhea from age 5 mos. * WF/gluten-free from age 9 mos. * NO MORE LOOSE POOP!

10/19/2006 Tested positive for DQ2 Heterodimer (HLA DQA1*05/DQB1*02) and negative for HLA DQ8. Have followup appt. with ped. GI in December!

Update: Told GI I was unwilling to do serum tests (give him gluten). GI said if what I was doing works, then keep on keepin' on! Happy, healthy & nearly two now! Occasional rash & loose poop from drinking bathwater, so switching to all gluten-free beauty/personal products.

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-Proud Poop Patrolwoman, E

I'm LOL :lol::lol::lol: !!! I'm a POP too!


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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The other thing that really killed me is her "and the diet REALLY sucks" comment. Boy - I'd love to hear what she tells her patients who have "confirmed" cases of celiac's (in her mind). Excuse me ??? You weren't exactly giving me a lot of other options here ! I emailed the woman TWICE (we work for the same hospital) asking what direction we should go in after his celiac blood panel/stool samples were negative. She had mentioned the biopsy and admitted it wasn't fool-proof because it's totally possible for them to biopsy an area that doesn't have flattened villi. Well let me jump on THAT bandwagon and put my son through a painful procedure ! <_< Needless to say, I refused the biopsy. Before we even got to the appointment I knew I wasn't going to allow them to biopsy him. She also said that she's been seeing more and more patients that don't "look" like they have celiac's, but in fact do (this was in response to me asking if she thought he had it).

By the way, my son was 23" at birth, and 8 lbs. 6 ozs. and has always been off the charts in height, and no less than 50th percentile for weight. I guess because he wasn't at death's door then he couldn't POSSIBLY have a gluten issue. :unsure: Reminds me of the TWO allergists that told me he wasn't allergic to soy, even though he was having HUGE explosive diarrhea bouts up to ten times a day, and a diaper rash so severe layers of skin were coming off his poor, raw little bottom.

The diarrhea improved hugely just within 24 hours of me switching him from soy milk to rice. Nobody ever bothered to tell me that there's about a 30% cross-reaction of soy milk with cow's milk. :angry: No allergy, huh ?

Sorry to go off on a tangent here. As I'm sure you all understand I've been HUGELY frustrated and worried for over 2 years while I've tried to sort this out. I can only thank God that despite all this going on, that my son still managed to thrive, and that He gave me enough stubbornness to listen to my instincts rather than these "educated" doctors !!


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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Guest nini

oh I was so po'ed when my daughters GI said that her diarrhea was just "classic toddler's diarrhea" that is just wrong imho... diarrhea in any form ISN'T NORMAL... (now granted I thought it was because I always had it, so I just assumed that everyone had diarrhea... my husband informed me that "no, not everyone has diarrhea all the time" :rolleyes::rolleyes:

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diarrhea in any form ISN'T NORMAL... (
I TOTALLY agree. I can't believe that would be acceptable to ANY doctor ! :blink:

Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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The other thing that really killed me is her "and the diet REALLY sucks" comment. Boy - I'd love to hear what she tells her patients who have "confirmed" cases of celiac's (in her mind).

Reminds me of the TWO allergists that told me he wasn't allergic to soy, even though he was having HUGE explosive diarrhea bouts up to ten times a day, and a diaper rash so severe layers of skin were coming off his poor, raw little bottom.

The diarrhea improved hugely just within 24 hours of me switching him from soy milk to rice. Nobody ever bothered to tell me that there's about a 30% cross-reaction of soy milk with cow's milk. :angry: No allergy, huh ?

Sorry to go off on a tangent here. As I'm sure you all understand I've been HUGELY frustrated and worried for over 2 years while I've tried to sort this out. I can only thank God that despite all this going on, that my son still managed to thrive, and that He gave me enough stubbornness to listen to my instincts rather than these "educated" doctors !!

Oh Heather...I REMEMBER those days when we first discussed the potential sources of the diarrhea and we went back and forth between soy and gluten. That had to be over a year ago. And it's almost pathetic that you figured it out on your own then....and once again had the moxy to figure it out now. Thank goodness you've been so diligent and persistent with all of this. Most people would have given up.

If ever you run into the GI again....you can let her know that all of my recipes are gluten, dairy, egg and almost completely soy-free as well and I have people asking for them constantly. Chances are, if you looked at what the typical foods that doctor eats in a day....you'd be telling her that her diet SUCKS. Knowing what's good for you is not doing what's good for you. The gluten-free diet combined with a whole foods diet (or paleo diet) can be one of the healthiest plans out there. It all boils down to perspective and application. It seems to me, that the GI is overly-negative on the whole thing. She does her patients a great disservice by being that way. And it is shocking to me that she was totally close-minded to even doing a trial of the diet to see if it could help Ryan. I thought that as his doctor, her first priority was to attempt to help him. Instead, it seems like you either have to drag her along kicking in screaming or leave her by the side of the road. <_< Like you don't have enough on your plate right now!


Vicky

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A few things...

1: I've only read your 1st post, I have yet to make it through the replies and such..

2: I have no experience with enterolab. Honestly, we've never had the $ Otherwise, I think on our own, we would have tested both kids, but kept the doc out of it (based on our experience with docs.. especially GI's

Which brings me to my reply. I probably could have quoted most of your post.. for it sounds so much like my own story concerning doctors. However, this one.. really got me!!!

She actually said to me "some kids never have a normal stool and we don't know why." I can't believe that chronic diarrhea would EVER be considered ok to a doctor !!

My ds suffered highly for the 1st 2 years of his lil life. Finally after pos blood work right after turning 2. His ped sent us to a Ped GI (he's seen others within that time, but this was at a Childrens hospital.. they were supposed to know more)

At this point in time, I had him off of dairy for nearly most of his life, and was fully relying on pro-biotics and was able to keep him from loosing too much weight.. in fact, I think he was growing pretty well at this piont (with great effort on my part!!!) However, he was still having 35-40 horrible D's in a day. This doc wasn't much concerned and said the EXACT same thing your son's doctor said to you!!! :angry: She followed that up with "He has diarrhea of Infancy" and should grow out of it by age 3 or so." HE HAD JUST TURNED 2 YRS OLD!!!!! :angry::angry::angry:

Thankfully, by now, I had a much better handle on things on my own, and was ready to wean away from doctors and do what I knew would be best for my little guy... without an offical dx. I took him home and right after the scariest time in our lives (which further proved things for us) (btw.. you can read all about this in this thread... http://www.glutenfreeforum.com/index.php?s...c=22701&hl= ) After that.. we fully took him off of gluten, I know it saved his life!!!

Later on his Ped tested his genes. He has one celiac disease gene and one GS gene. Some day I would like to go through enterolab to see if they can clear up other questions we have concerning Matthew (one being dairy) but that will be awhile still.

My prayers are with you and your son. If you haven't yet... let us know what the results are.

*off to read the other posts now*

Kristie

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A few things...

1: I've only read your 1st post, I have yet to make it through the replies and such..

2: I have no experience with enterolab. Honestly, we've never had the $ Otherwise, I think on our own, we would have tested both kids, but kept the doc out of it (based on our experience with docs.. especially GI's

Which brings me to my reply. I probably could have quoted most of your post.. for it sounds so much like my own story concerning doctors. However, this one.. really got me!!!

My ds suffered highly for the 1st 2 years of his lil life. Finally after pos blood work right after turning 2. His ped sent us to a Ped GI (he's seen others within that time, but this was at a Childrens hospital.. they were supposed to know more)

At this point in time, I had him off of dairy for nearly most of his life, and was fully relying on pro-biotics and was able to keep him from loosing too much weight.. in fact, I think he was growing pretty well at this piont (with great effort on my part!!!) However, he was still having 35-40 horrible D's in a day. This doc wasn't much concerned and said the EXACT same thing your son's doctor said to you!!! :angry: She followed that up with "He has diarrhea of Infancy" and should grow out of it by age 3 or so." HE HAD JUST TURNED 2 YRS OLD!!!!! :angry::angry::angry:

Thankfully, by now, I had a much better handle on things on my own, and was ready to wean away from doctors and do what I knew would be best for my little guy... without an offical dx. I took him home and right after the scariest time in our lives (which further proved things for us) (btw.. you can read all about this in this thread... http://www.glutenfreeforum.com/index.php?s...c=22701&hl= ) After that.. we fully took him off of gluten, I know it saved his life!!!

Later on his Ped tested his genes. He has one celiac disease gene and one GS gene. Some day I would like to go through enterolab to see if they can clear up other questions we have concerning Matthew (one being dairy) but that will be awhile still.

My prayers are with you and your son. If you haven't yet... let us know what the results are.

*off to read the other posts now*

Kristie

Ahhhhh....so stupidity ISN'T just localized to our ped GI office ? :P "Diarrhea of infancy".....GIMME A FLIPPIN' BREAK !!! :angry: One of the benefits to my job (I monitor phone calls between physicians, among other things), is sometimes I get free advice, unbeknownst to them. :lol: I heard a call between a doctor and another of the GI's here at the university who had a milk allergic patient still having diarrhea. The GI advised mom supplement with primadophilus, which I've been doing ever since.

Yes, EnteroLab can be a bit pricey - I bought the complete panel (including genetic testing), got the free milk sensitivity panel, and also purchased the colitis panel - all of which cost just over $400 including shipping. It took a while for me to be able to afford it - and even when I bought it I really couldn't afford it, lol. Here are his results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.

Interpretation of Fecal anti-casein (cow’s milk) IgA antibody: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

Interpretation of Fecal lactoferrin: A negative fecal lactoferrin test indicates you have no neutrophilic inflammation in your stool typical of acute and/or chronic colitis. This essentially rules out ulcerative colitis and Crohn’s colitis, however it does not completely rule out microscopic colitis.

Much to my surprise - he has TWO genes - I had no clue that either DH or I carried the gene. I wondered if maybe I was GS because I'm hypoglycemic, but to see it confirmed and in writing was a bit of a shock.


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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I have two DQ1 genes, too. I wonder if anyone without a celiac gene has ever tested postive on a conventional celiac panel. All my conventional tests came back negative.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Oh Heather...I REMEMBER those days when we first discussed the potential sources of the diarrhea and we went back and forth between soy and gluten. That had to be over a year ago. And it's almost pathetic that you figured it out on your own then....and once again had the moxy to figure it out now. Thank goodness you've been so diligent and persistent with all of this. Most people would have given up.

If ever you run into the GI again....you can let her know that all of my recipes are gluten, dairy, egg and almost completely soy-free as well and I have people asking for them constantly. Chances are, if you looked at what the typical foods that doctor eats in a day....you'd be telling her that her diet SUCKS. Knowing what's good for you is not doing what's good for you. The gluten-free diet combined with a whole foods diet (or paleo diet) can be one of the healthiest plans out there. It all boils down to perspective and application. It seems to me, that the GI is overly-negative on the whole thing. She does her patients a great disservice by being that way. And it is shocking to me that she was totally close-minded to even doing a trial of the diet to see if it could help Ryan. I thought that as his doctor, her first priority was to attempt to help him. Instead, it seems like you either have to drag her along kicking in screaming or leave her by the side of the road. <_< Like you don't have enough on your plate right now!

I think that WAS over a year ago, Vicky...in fact, I know it was. He was at his first daycare back then. Remember that horrible diaper rash he was having, and how he'd start to cry as soon as he knew his diaper was going to get changed because it was so painful for him ? I think even he remembers - to this day if he gets even the slightest diaper rash he gets fearful. Nice legacy for the doctors to leave behind. :angry: I don't think I would have figured it out if I hadn't had your help. At the very least, it would have taken me longer than it already has. I can't thank you enough for your help.

Speaking of your recipes....if you ever write a book, I'll be first in line to buy it ! In the meantime, don't be shy about passing them along to me - I need all I can get ! ;)

I have two DQ1 genes, too. I wonder if anyone without a celiac gene has ever tested postive on a conventional celiac panel. All my conventional tests came back negative.

Interesting !


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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I think that WAS over a year ago, Vicky...in fact, I know it was. He was at his first daycare back then. Remember that horrible diaper rash he was having, and how he'd start to cry as soon as he knew his diaper was going to get changed because it was so painful for him ? I think even he remembers - to this day if he gets even the slightest diaper rash he gets fearful. Nice legacy for the doctors to leave behind. :angry: I don't think I would have figured it out if I hadn't had your help. At the very least, it would have taken me longer than it already has. I can't thank you enough for your help.

Speaking of your recipes....if you ever write a book, I'll be first in line to buy it ! In the meantime, don't be shy about passing them along to me - I need all I can get ! ;)

Interesting !

LOL!! You KNOW that I'll be sending over anything that you need. :D You know, it seems that a lot of the members of your other allergy board are now moving into the gluten sensitive/celiac side. I wonder if there's a bigger connection than we all would suspect. Personally....I think so. First me, then Kensie, then Aziah and now you.

I'm sure that you would have figured it out eventually. You've been pretty persistent in getting to the bottom of things. So where are you at in terms of the diet? Getting close to phasing out the foods in the pantry yet? Let me know when you have and I'll e-mail you a list of alternative products you might enjoy. Half the battle is finding the alternatives that you like. After that....it gets much easier. ;)


Vicky

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