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Toddler, Should I Do The Endoscopy?
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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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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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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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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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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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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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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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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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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
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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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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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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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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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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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everything went well with the procedure and we will have the results within the week. thanks so much for all the help everyone:)

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I'm glad it went so smoothly. :) Fingers crossed

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I was of the understanding that it's pointless testing bubs 2 and under because it's so unreliable. My nephew is 10 months old now and since his mum went gluten free he became more settled and put on weight. She did the elimination diet and by that time my mum and daughter had been diagnosed with it so we thought it was worth a try. When he is older they will test him.

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I was of the understanding that it's pointless testing bubs 2 and under because it's so unreliable. My nephew is 10 months old now and since his mum went gluten free he became more settled and put on weight. She did the elimination diet and by that time my mum and daughter had been diagnosed with it so we thought it was worth a try. When he is older they will test him.

I believe it is pointless. But after going back and forth on it for days we decided to do it- but we are still treating it like it is celiac even if it is negative. She is gluten free now and doing much better already! I would LOVE to know *forsure* so that I can know if I need to be worried about my other girls also.

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I would LOVE to know *forsure* so that I can know if I need to be worried about my other girls also.

I don't think any test can tell you "for sure."

Doctors don't agree on whether gluten intolerance belongs under the subheading of celiac, or vice versa. Some think they are two completely separate conditions, while others believe that gluten intolerance is simply early-stage celiac.

Genetic tests can indicate likelihod, but plenty of people without DQ2 and DQ8 alleles have either full-blown celiac or "just" gluten intolerance with symptoms at least as severe as those of someone with biopsy-diagnosed celiac.

Environmental triggers play an enormous role in triggering celiac, no matter what the genetic predisposition.

If your other daughters have the same gene pool, the same general diet, the same home, the same schools, etc. then they are facing the same environmental triggers.

It doesn't mean that they will all develop celiac.

But it means that you should be on the lookout for any symptoms that might indicate a problem with gluten. Yes, this means the obvious intestinal symptoms, but there are other symptoms as well, and for some people, the autoimmune reaction mysteriously skips the intestines, or for some, their intestinal damage is "silent," meaning that they have damage but no discernable symptoms.

Other possible symptoms of celiac:

eczema/psoriasis

thyroid issues

type 1 diabetes

joint pain

migraines/headache

vestibular issues (dizziness, tinnitus, etc)

neurological issues (including depression and bipolar disorder)

unexplained weight GAIN

carbohydrate "addiction" (particularly to wheat, obviously)

repeated candida infections

anemia

unexplained vitamin deficiencies (for example, in spite of supplements, which would indicate malabsorption)

small stature

ADD/ADHD/Asperger's/autism diagnosis

unexplained tiredness/exhaustion

I'm probably leaving a whole bunch out. I'm sure someone will fill in whatever I'm missing!

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I don't think any test can tell you "for sure."

Doctors don't agree on whether gluten intolerance belongs under the subheading of celiac, or vice versa. Some think they are two completely separate conditions, while others believe that gluten intolerance is simply early-stage celiac.

Genetic tests can indicate likelihod, but plenty of people without DQ2 and DQ8 alleles have either full-blown celiac or "just" gluten intolerance with symptoms at least as severe as those of someone with biopsy-diagnosed celiac.

Environmental triggers play an enormous role in triggering celiac, no matter what the genetic predisposition.

If your other daughters have the same gene pool, the same general diet, the same home, the same schools, etc. then they are facing the same environmental triggers.

It doesn't mean that they will all develop celiac.

Wow what a helpful post seriously. I am So very (obviously) new to this and really appreciate the post. I am actually starting to believe Emalyn has a tolerance issue to milk and eggs now that I am more aware of the stuff. I have cut out a lot of things and let her have milk after two weeks without it and she had issues. Sometimes I get so over-whelmed at all of this. If there are any books or anything that you recommend, please share and I will get them. I know there are plenty out there, just wanted to see what you all recommended. Thanks again!

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Hi there!

I'm a newbie...my twin girls (fraternal--so as alike as your kiddos) will in all likelihood be confirmed celiac this week (they have high ttgs, the gene pair, plenty of symptoms--although each girl has a unique set of symptoms).

My favorite book is Celiac Disease by Green--I paid extra on Amazon to get two day shipping and read it in a weekend. My second book is gluten free kids by Korn. It's written by a mom and has lots of parent-views on the topic (like what to do when a kid "cheats" on a gluten-free diet).

Hope that helps!

Wishing you all the best!

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Well doctor called and biopsy was negative. So that is a good thing that she doesn't have internal damage, but I still do not know what to think. I *knew* going into this that the test could be negative and mean nothing, BUT now that the tests are negative, I am thinking, "Am I imagining all this??" :(

I guess the only thing I can do is keep on the gluten free diet and then give her some in a few months, right?

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So we are still Gluten Free for three weeks now. She has had gluten TWICE when I was thinking about putting her back on it for the biopsy. So these are the changes (i think)

-Night sweets/nap sweets almost completely gone. They stopped within three DAYS of stopping gluten. She has sweet a little during nap but our air has been messed up and it has been around 75 in the house so I am thinking that is why.

-Walking much better on her leg and trying to run now! Seems more energized seriously.

- Sleeping better at night and when she DOES wake up, she doesn't scream bloody murder. She just comes to our bed room.

- Much friendlier and has not been so moody and so easy to "set off" I guess you could say. My other daughters use to have to walk on egg shells with her at times.

- Stool has been much firmer most all the time but not every time.

- Stomach has went down a lot BUT she did have to do a liquid diet for three days so that might have helped with that....

Okay so one other thing, when I gave her cows milk (after two weeks without it) she got a little sick and also one night after she had eggs for dinner, she screamed most of the night.

So with negative blood work (after a week of gluten free) and negative biopsy (with two weeks of gluten free) Where do I go from here? How long do I give the diet a try before doing a "test" to see if she reacts? or do I just keep gluten free and don't look back?

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Hi there! No, you're not imagining things--although I would be asking myself the same thing in your shoes. Also, my DH really pushed me on my observations--he was skeptical of all that I was seeing (or maybe from his point it was imagining). So, some double-checking of thinking is healthy.

I'm a newbie, so here are some of my thoughts (based on my experience with my twin 5 yr olds):

- Gluten affects the neurology of children (especially our Twin A)

- Gluten seems to affect the sleep patterns of some children, sometimes in opposite ways (Twin A sleeps like a log--possibly because her body isn't getting enough nutrients. Twin B slept through the night a total of 5, yes five nights between birth and two years old.)

-Gluten seems to affect Twin B's joints (note that I forced the pediatrician to get a rheumatology order to rule out arthritis)

- Many people say that lactose intolerance and gluten issues/celiac disease often go hand in hand (including our Pediatric GI who is a Celiac researcher)

- It's fairly well documented that tests for children at 2 yrs old are not necessarily reliable, try to get a celiac expert to see your child (Dr. Pietzak at USC/Children's Hospital LA is excellent).

- If being off gluten works for your child, that is good news!

One scary thought I'm going to put out there based on some of the reading I've done and watching a friend with cancer (who by the way survived and is thriving): night sweats were one of her symptoms. Also, limping in children should be well examined to rule out horrible things like bone cancer. I spent a lot of time trying to figure out if our Twin B had more than "growing pains" and had to really push the doctors on this.

Most importantly, you're a great Mom, on top of things, figuring out your little one's puzzle. Hang in there! It took us 2.5 years to get many of the answers we were seeking!

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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