[Electra]

-Fellow Pedi doc full of
-Not able to be in infant study (not surprised)
-Dr. Fasano will test infant for Celiac

Start with the good. Dr. F will test my ds3 age 4 months now for Celiac in 2 months. During that time I must eat Gluten (not a problem for me) and choose to deal with my ds3's reactions. Dr. Fasano states there are no known cases of Celiacs in infants (wish I knew him with my ds2). But he is willing to find out if my belief is true, he is able to see that the symptoms are very much like Celiac. I always like Dr. Fasano for that, he sees symptoms not statistics. Finally, someone wants to know!!! If my ds3 continues to have reactions as I re-introduce gluten and test positive to blood work (and of course then a biopsy), it will make the medical journals.

I asked if the TTG had become more sensitive since previously it was not very effective in cases of only partial villi atrophy (29%). He said that it had. I asked if he would use the TTG IgG and the answer was yes. That is important for a couple of reasons and Dr. Fasano knows them, IgA levels tend to increase with age, so a young child does not have the levels necessary to trip the tests.

I really don't care if it makes "history". As my dh and I talked it over, we agree that 1) it won't kill our son and 2) it may prove beneficial to many other infants and children. Of course, it might just be plain ol' gluten sensitivity (more below).

Ds3 is not eligible for the infant study b/c ds2 is not biopsy proven Celiac. He is, however, in Dr. Fasano's opinion (when I saw him in Jan 06) Celiac, just not medical fact. Ds2 is DQ2, IgA deficient and IgG positive. I figured this would "out" us for the infant study. I already know my ds3 will react to gluten when ever it is introduced, so our participation in the study really would not benefit me, my children or the advancement in what is known about Celiac.

And finally, I have not encountered the type of Pediatrician I only read about on alternative parenting boards until yesterday. The doctor who came in to see us first was a Fellow and heading up the infant study, she was misinformed about so many things.

1) My ds3 could not possibly be Celiac yet, he just has food allergies.
My comment was food allergies would produce reactions like rashes, breathing difficulties etc. Oh no, a food allergy could give someone diarrhea. I said then we are not talking about IgE allergy, we're talking about IgG food intolerance. Oh no... Blah, Blah, Blah
My mistake was to mention a streak of blood in his stool after I ate a granola bar - oats. Not 1 of my children can tolerate oats and neither can my dh. First response, wheat allergy.
She ordered a RAST test when we do the Celiac Panel in 2 months.
2) My ds3's spit up requires treatment, he spit up while we were there. She set us up for an upper GI, calling it an x-ray -- it was a CAT scan with a barium swallow (I went to the radiology dept to inquire). She told me that he could have twisting in his system (WTH?) And she gave me a script for Zantac. I believe neither one of those is necessary, she said it herself that spit up gets worse around 4 months before it gets better. When we go back, I'll just state that our pediatrician did not see the upper GI as necessary. She can take that however she likes, but I can say for sure that neither our pedi nor FD would approve of that test for my son. It's almost like she felt she had to "do something" since I was there.
3) Does your ds3 take vitamin? The look on my face was one of confusion. And she proceeded to tell me that all babies need vitamins. That while bfing is best it lacks Vit D. I told her our pediatrician recommends sunlight and we go outside everyday for walks. She still insisted he needed a vitamin drop and wrote it on a script!!!
She assumed he was vaxed, I almost said no, but rethought that b/c of what was going on. I let her assume so, she obviously didn't read the patient form I had to fill out. I don't vax period.

The only questions I have left are "what if it isn't Celiac?" "what if it is just gluten sensitivity?" So, I'd be wrong, I can deal with that, I think. I think there is always a hint of doubt.

I ate a Whole Foods wrap for lunch and a cheeseburger for dinner. Guess what my ds3 was like all night? And now? Crying, miserable. Dr. Fasano did say if he was really miserable to call them. Yeah, what can you do less than 24 hours into my consuming gluten and him ingesting it from my breast milk. I keep thinking am I imagining something that isn't??? I won't know until I see the poos and until I see them I'm in self-doubt.

Dr. Fasano still does not think enough gluten passes to be a problem, but he sees the symptoms and knows it is "possible". The study I had pulled off the internet was from 1998, so I refrained from giving it to him. If it's that old, he should have seen it. Maybe I'll give it to him after the test come back positive (if they come back positive).

It's confusing b/c his Fellow pedi thinks wheat allergy which would mean proteins passing into breastmilk, so two docs in the same room can't even agree on breastmilk composition. It miffed her as to why I was DF, I explained I'd never gone back after nursing my ds2. And I said I do not eat soy b/c I don't believe phytoestrogens are good for anyone in the quality eaten in America. She was really trying to push the food allergy thing, which she does not even have clear herself IMO.

So, if ds3 does not have Celiac, we here know he is gluten sensitive and they think wheat allergy which is so convoluted.

In the end, I did get what I wanted nearly 4 months ago, acknowledgement that Celiac in infancy is possible and someone to test my child for it. Now that I have that I really must follow through. And hope I see Celiac Poos in a few days (that sounds so horrible, but it is the only way I'll know). I'm prepared with super butt cream b/c what happens is mucous lining is shed in 1 or 2 poos, then bubbly frothy poos, then straight liquid that burns the butt like a "burn" not a rash and that has to be just straight bile running through since the mucosal lining that protects the intestines is gone. Some recovery over night, to start all over again the next day.

Leaving Baltimore on a holiday weekend was a nightmare over 3 hours to home! I'm so glad I live in the "boonies".

[canoe]

Electra,

Thank you for letting us know about the outcome of your visit with Dr. Fasano.

How frustrating that your little guy is going to have to go through this, but I do agree that he needs a definitive diagnosis.

It will be a trying time for all of you.

Marilyn

[loisba]

Poor baby! Keep him 'larded' up good with the super butt cream! And keep us updated, please, on the outcome.
Hugs,

[Swuzly]

I spent a little time reading Dr. Fines website today and wonder if the secondary doc might benefit from having access to his site, Electra. www.enterolab.com, on left hand side of home page look for the slide presentation. It quite dispells many of that docs positions. Could be benefical for any follow up visits.

And for your poor wee baby,... a kiss,

Leslie

[KimS]

While I appreciate how frustrating it is for you... I must reinforce that I'm not surprised by the responses.

Wheat allergy needs to be treated the same as a gluten allergy or celiac. That has been stated in several abstracts that I've seen.

Also, allergies are not truly understood even by allergists. There is SO much room for learning in this area that it boggles the mind. Testing is not accurate and results can often not be accountable.

We saw the abstract, not long ago, that shows gluten does get through breastmilk... they did admit to that occurring... just not to the degree where there would be visible damage... This may have more to do with the time span of ingestion also... but there's really no way of knowing at this point.

This has been backed up just by watching growth charts for celiac kids. These charts show that, at approximately the time of the introduction of solids (usually grain/gluten based), the growth process takes a nosedive. It is one of the indicators of a celiac child. This occurs even in a child listed ftt on breastmilk alone. (My son is a prime example.)

It is also one of the indicators of an allergy or severe sensitivity.

Sensitivities do not make any testing charts because there are no tests for them. Many docs in the medical allergy community will admit that life can be severely, adversely affected by sensitivities... but there are no tools to work with, so their hands are tied... There is nothing they can do re: sensitivity. There is no data that they can point at and use to advise a patient about diet alterations. That is how dr.s make their diagnoses... using testing data. So, no testing... no data... no opinion... otherwise they might get sued for being 'misleading' to patients and suffer malpractise suits.

So, while I completely sympathize with not getting agreeing opinions from different doctors, I feel like I must defend the doctors who have to work in an environment that pretty much tells them what they can or cannot say, based on test results. It must be very frustrating to want to help someone but not be able to say anything for fear of losing your license.

Lastly, I just want to say that I think it's very kind of you, on a global level, to want to get this for the world to have a better understanding of the mechanisms involved. I hope it goes quickly for you and your son doesn't suffer too much. I hope that some test results will show 'something' so that it's not all for naught.

Kind regards,
KimS

[Electra]

Into day 4 and I'm not seeing major signs. He has only poo'd 2X, once yesterday and once today. That is an increase b/c he had slowed down to 1 poo every 3 to 4 days which is common for a bf baby of his age.
The poos are not the right color, but that could be anything.
His demeanor is a combination of more fussy than usually and dazed (it's weird). He has his smiley moments as did my ds2, but he just seems different. He found his fingers and is sucking on them almost 24/7 which could be a new discovery or him trying to sooth himself.
Now to justify, he seems to have a cold, he isn't runny, but he is congested and his eyes have eye boogies and crusties. That is a first. My dd had to have her tear ducts opened at 16 months old, so I am praying this is just a cold doing this. I don't want to go through tear duct probing again, it was stressful putting a wee one under General Anethesia. (of course, if we end up doing a biopsy then we'll be there anyway)
Only time will tell and I'll keep you all posted.

[jamietwo]

As my dh and I talked it over, we agree that 1) it won't kill our son and 2) it may prove beneficial to many other infants and children.

Electra, I have been debating with myself whether or not to raise this "possible" issue, and while its none of my business, I'm going to raise it anyway in case you haven't considered it. You mentioned in another thread that your other son was having emotional problems and you wondered if it was a result of the pain caused by his celiac (or at least this was how I interpreted what you wrote). Is it possible that the same thing could occur with your baby because of this gluten trial?

As for your point 2 above, I know many families will be so grateful to you and your baby if this does "prove" something.

[KimS]

Gluten contamination in a gluten sensitive person often presents in a 'viral' manner.

I would be highly suspicious. Both my high reactor and my child who everyone was 'normal' react this way to contamination.... as do dh and myself... and many other people I've spoken to.

[Electra]

I am hoping 2 months will not cause lasting emotional trauma vs the 3 1/2 years on my ds2. Believe me I'm thinking about it everytime ds3 cries that aweful cry and arches his back. I'm watching closely, if he is just miserable 24/7 or even the Majority of his days, then I will stop. He, like his brother, are not in pain, visibly 24/7, just sometimes. I just really hope it's for something positive, KWIM?

KimS - very interesting point about viral symptoms. It's logical -- except he had the runny nose before my return to gluten, not the goopy eyes though.

So far we're surviving and waiting. He is sleeping more than usual.

[KimS]

He could be reacting to more than gluten. Every person in my family has multiple sensitivities... which makes sense.