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Toddler, Should I Do The Endoscopy?


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#1 rachelh4207

 
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Posted 08 March 2012 - 08:16 PM

My 2 year old has had a rough two years! First of all, had ear infections from 6wks to 9 months when she finally got tubes, was very small for her age and always has been. Currently her issues are:
-night sweats (and nap time ones) wakes up SOAKED
-irritability
-broke her leg- two bones- a few months ago from a very small fall (not sure if that could be related)
-fell a few months before and chipped her front tooth which quickly abscessed and had to be pulled. (she was trying to run and bless her heart she is just not very good at balance) (again, not sure if this could be related)
-swollen stomach- she is skinny but in the last year her stomach has gotten huge! still tiny body and you can see her ribs on the sides but her belly swollen
-chronic yeast infections
-rashes
-not water diarrhea, but loose stools
-blood sometimes when i wipe her (but she is NOT constipated)
-delayed development (walking and such)
-very weak compared to my other children
-Has the "allergy" look to her. sick eyes and such.

We *thought* they had ordered blood work at her Pedi but they didn't. We didn't find that out until a week later when we find out what all else they did order. All her CBC stuff looked great. Thyroid was a little off but nothing major. And she had allergy test at 1 that just showed some egg/peanut sensitivity

Well after the first blood work, we thought we would try gluten free to see if it helped while we were waiting on the results. In this time she must have gotten a cold because she felt yucky and ran a light fever. But her sweets have stopped, her rash is drying up and her stools are no longer loose, they are normal (I guess) and her over all color seems to look better to me. and she slept ALL NIGHT last night. First time in weeks!
So yesterday we found out it was NOT the celiac test that they did, so they did the blood work after 6 days of gluten-free. We are waiting on the results. Would it still show up?

And the Pedi GI doctor wants to do a endoscopy Now before she gets even further into gluten-free. should I do it before getting the blood work back (he said he wants it regardless if the blood work is positive or negative) or should i just wait and then go back on gluten when/if we decide she needs it. I just hate to do stuff she doesn't need. Part of me thinks it is just a gluten tolerance anyways.
Any advise would be much appreciated:)

Rachel
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Rachel

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#2 mushroom

 
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Posted 08 March 2012 - 08:52 PM

Oh Rachel, your poor wee baby. My heart was just breaking as I was reading your post. What a time of it she has had, and yes, it does sound very much like it was all due to gluten. Soft teeth, broken bones, yeast infections, really skinny but bloated belly, rashes, loose stools, delayed development, weakness, what sounds like gluten ataxia (poor balance), irritability, unexplained fevers, muscle weakness, abnormal thyroid values, I would be amazed if her blood work was not positive.

Now to the endoscopy question. It is really your choice if you decide to put her through the endoscopy (although it is not as bad as most parents imagine :) ) She will be well sedated and will not remember anything. The big question is whether or not your ped. GI will give her the diagnosis without the endo - some will, some won't. As a wee one, she is going to need special provisions made for her going through play center, kindy, school, college etc., and schools really want to see that piece of paper with the diagnosis on it beore they will comply with the ADA requirements. To have the diagnosis will make her life much easier. Talk to your GI and ask him why he wants to do it when you already know what the problem is, and see what he says. If you take her off gluten now, and later want the diagnosis, she will have to eat gluten for 2-3 months, which I am sure she will find intolerable after recovering from it so it really needs to be done now if it is going to be done. One week off gluten will not make any difference to her test results, but take it out 2-3 weeks and it well could. If she is going to have the endo she needs to go back on gluten now until it can be scheduled, unfortunately.

Welcome to the board, by the way, and there is no such thing as "just" a gluten intolerance. It is a very major deal and it is always useful to have a baseline endo for damage so that her progress can be monitored in future if necessary.

Talk it over with your docs and your husband and I know you will make the decision that is right for your family and child. :) Best wishes for your wee girl growing up strong and healthy, and do keep us informed of how things go.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 mommida

 
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Posted 08 March 2012 - 09:24 PM

Shroomie said it very well.

I just want to make sure it is clear... If you do the endoscopy she must be eating gluten! Gluten can be a "trigger" for other disorders too.

A gluten challenge can be very dangerous, watch for signs of dehydration. In fact have a dehydration symptom check list on hand.

Honestly I feel a gluten challenge is more of a concern than the endoscopy with biopsy.
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#4 rachelh4207

 
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Posted 09 March 2012 - 04:31 AM

Mushroom: Thanks for the reply. I do at times think I want an official "diagnosis" so that when she is older she will not question it and neither will other people who are giving her food thinking that it was "my" diagnosis. I do stay home with her 24-7 though and we home school, so as far as worrying about that, it is not my main concern. The only time she is given food out of my sight is at church in her Sunday school class, so last week I just sent some gluten-free cereal for her to munch and she did well with it. The GI pedi said he wanted BOTH test to diagnosis either way. He also told me that there was no way she could have had it as an infant (gluten) because it doesn't go through breast milk and I am questioning that. I thought it did? Also, once they gave me so much grief about her poor weight gain, I put her on formula at 6 months and they had me add oatmeal cereal to every bottle to help her gain (they said, which I now know much more about formula, and "oatmeal cereal" and regret everything I did for her UGH!) At this point after having so many doctors steer me in the wrong direction, I am just scared to listen to this one too :(

Mommida: So are you saying the biopsy would be pointless at this point? She will be gluten-free for almost 2 weeks at the time of it. Should I put her back on it today, which would mean she would have it for the 5 days before it and only went gluten-free for a week at most?


Also not sure if I mentioned, but he wants to do the colonoscopy while he is in there he said but I am not crazy about that. His reason is because of the Blood. what do you think?

Thanks again for all the help. This web site is the ONLY Place I have found help!!!! (through reading all the post and stuff)

Rachel
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Rachel

#5 rachelh4207

 
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Posted 09 March 2012 - 04:52 AM

Also, we grind our own wheat and all that. A friend of mine was just diagnosed with celiac and told me that even Emalyn breathing it could make her sick if she had it. The doctor said no way. That as long as she doesn't eat it. I just wish that there were more point blank directions for me instead of some telling me one, some telling me another


FYI she slept all night AGAIN last night and her night sweats are still gone! I can't believe it. After her being so soaked every morning and after every nap.
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Rachel

#6 mommida

 
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Posted 09 March 2012 - 07:17 AM

I do think it would be pointless getting the scope done without eating gluten. Especially when Celiac is your top suspect.

I don't argue with peeps when they say breathing in gluten made them sick. How much gluten will make a person sick? The amount that your body recognizes it and sets your immune system out to attack it.
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#7 rachelh4207

 
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Posted 09 March 2012 - 07:42 AM

So honestly should I back the procedure to a later date and put her on full gluten for the time being?

Oh she is not saying it makes HER sick, that she read somewhere it could. I don't know enough about it to know either way- That is just what the doctor said yesterday.
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Rachel

#8 StephanieL

 
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Posted 09 March 2012 - 08:57 AM

Some Mom's DO pass gluten through breast milk, some do not.

I don't think it is so much the breathing of gluten that is the problem. I think it is more of the "flour dust" settles, gets touched and then into the mouth via eating etc. Esp. with kids who put EVERYTHING in the mouth! But my understanding of ingestion is a bit more liberal than some as we deal with allergies and ingestion with ANY mucous membrane can lead to an anaphylactic reaction.


If you want an official dx for school down the line, I would put her back on gluten ASAP (it's only been 6 days off, right?). Get the endoscopy in 6-8 weeks and decide at the time if you want to do gluten-free or not.

I know others are saying "Oh, Celiac!" and she does have a lot of the signs and symptoms but she's also a baby. Some of those things listed are NORMAL for little ones.
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#9 rachelh4207

 
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Posted 09 March 2012 - 11:23 AM

Yeah I think a lot of her symptoms could be typical toddler stuff (like the fussy stuff)

I got her results from the blood work today; Keep in mind she was off gluten for a week prior, so I am not sure if they are even valid! :( But the nurse (from the allergy doctor that ordered them) just said they were fine. So I asked what the numbers were here they are:

Tissue Transglutaminase 3 (<5 is negative)
Glibin(deamidated)ab 5 (<20 is negative)
IgA 96 (range 24-121)

Edited by rachelh4207, 09 March 2012 - 11:40 AM.

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Rachel

#10 mushroom

 
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Posted 09 March 2012 - 11:59 AM

Everything I have read says that gluten is passed through breast milk. And yes, if the oatmeal was not gluten free she could have reacted to that too. If you are grinding wheet, there is going to be flour in the air and she will not only be breathing it but it will eventually settle and land on food and utensils and the floor and will actually be everywhere :o

You will need to get a copy of her test results and see what tests were run and what the ranges were. Thrre are five tests in a full panel so they did not run them all. Probably the tTG IgA and IgG and the total serum IgA (they have a bunch of fancy words they use with these depending on the lab). They do sound like they may be within the normalish range. If the nurse calls you back ask what ranges the lab used too because the raw scores are meaningless without that. . However, there is one test that probably was not run,. the DGP (deamidated gliadin peptide) which is really the best test to use in young children and the most specific for celiac. Bear in mind, though, that testing in young children it is difficult to achieve an accurate result.

It is possible to test negative on blood work and positive on biopsy. And if you put her back on gluten today until the test it should not affect the results. Normally one week is not long enough for healing to take place in the small intestine. But the biopsy could still be negative, especially because of her age and the results at her age being notoriously inaccurate. At least the biopsy would show if there is anything else going on in the upper intestinal tract. And it certainly would not indicate that gluten is not her problem either. Her symptoms are not predominately GI symptoms, and the gluten could well be attacking her neuological systems - muscle weakness, balance problems, delayed development, etc. When this is the case, celiac is always harder to diagnose because doctors tend to think of celiac as being a gastrointestinal disease only. However, I still think if I were you I would go ahead with the biopsy and then take it from there.

If she improves on a gluten free diet, and starts developing normally, after the biopsy, then you will know that gluten is the problem and when she is older you can have her do a gluten challelnge.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 mushroom

 
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Posted 09 March 2012 - 12:07 PM

Okay, I see we cross-posted and they did do the DGP. And the last one is the total serum IgA to make sure she is a normal IgA antibody producer, which she is. But it is still possible to have a positive biopsy result with negative blood work, and it is still possible for gluten to be the problem even when all testing is negative :( If you decide to proceed with the biopsy (and resume the gluten until then), do put her gluten free right after the biopsy and keep her as free as you possibly can (maybe grind the wheat for the rest of the family someplace else where it will take the flour out of the house) and give it a good three months to measure her response.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#12 rachelh4207

 
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Posted 09 March 2012 - 12:34 PM

and it is still possible for gluten to be the problem even when all testing is negative :(


THIS is why I am stressing out. :( I mean we do go above and behind (or try too) to make sure I cook every single thing the girls eat and make sure they eat healthy and balanced- and we had been under the impression that whole wheat was a good thing...now that I know it could be horrible for her, I want to KNOW since it is such a big part of our life:( I thought about buying bread for everyone else and not making my own anymore for the time being (if we stay gluten-free) I gave her half a piece of bread today (first gluten in over a week) hoping she would show me a sign if it was bad for her- but I know that with celiac it could be reacting, just silently....hurting her internally.....being a parent in a situation like this is sooo hard!

I am not saying money is a deciding factor, but If the test could be negative anyways (from doing gluten free) it makes me NOT want to pay for it and go through the whole ordeal just to be told that she needs to get on gluten and re-peat it. I am scared to ask how much all this is going to cost when it is all said and done (we are still paying for her leg and still have more follow-up with a pedi orthopedic since the leg is not healing straight)
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Rachel

#13 mushroom

 
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Posted 09 March 2012 - 01:13 PM

I really don't think that being off gluten for a week will turn a positive test into a negative - it's just not long enough. I meant that because of her age the testing is not terribly reliable, and there is a 20% approximate error rate in the testing anyway. I meant that with neurological symptoms you don't always get a positive gut result, and I meant that some people will never test positive for celiac disease but are nevertheless gluten intolerant. :) It is all so difficult, this celiac thing. And I do appreciate your problems particularly in doing everything you can to provide health for your family, going far above and beyond what most parents do, and it's still hard to get it right :rolleyes: I would think that if you were going to retest her in the future, you should wait until she is a little older when the chances of accurate testing are higher (but still no guarantees). At that point she would be old enough to understand the process and its importance to her. But I would definitely keep her off gluten after all testing is completed, at least until you have proved to yourself that gluten free is not helping her.

I am concerned that her leg is not healing straight, and that she broke both bones so easily in the first place. Do get her vitamin D levels checked because low vitamin D can lead to osteoporosis and brittle bones, and she may need vitamin D supplementation, even at such a young age. That's the curse of celiac, it can prevent the absorption of necessary nutrients and in growing wee ones these nutrients are so important. She probably needs a complete nutrient blood panel, in fact.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#14 rachelh4207

 
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Posted 13 March 2012 - 07:51 AM

well after much stress and prayer- we decided to do the test. It is tomorrow at noon. Will let you know how it goes. I am not planning on finding out much truthfully- just think after being off the gluten it could make it harder to diagnosis. Because of the colonscopy, they have her on liquid diet yesterday and today so haven't been able to get gluten in her anyways.
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Rachel

#15 mamaupupup

 
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Posted 13 March 2012 - 10:41 AM

Thinking of you!
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