sashabetty

Emma's mom,

If you are thinking about doing an endoscopy or further testing, I would not stop gluten yet. They do heal surprisingly well, and discountinuing gluten could make future testing inaccurate.

Also, yeast can possibly trigger the onset of Celiac, so the antibiotics could have played a part in the symptoms manifesting when they did.

And the symptoms can come and go, at least in our experience, but I can't say if that's what's happening in your daughter's case.

As far as what to do now? You have to make that call.

All I know is I kick myself because I didn't pursue further testing when 2 yr old got sick last year since the gluten-free diet made her better. We put her back on gluten this year and she did get sick again but not as sick and the tests showed nothing. So we tortured her for 3 months just to show it made her sick but not to prove anything.

It's hard, and it's a personal choice, but I think that a few days aren't going to change her health too much if you are going to do more tests.

Take care.

Our pediatrician called today about the results of my 2yr old daughter's endosopy, because apparently the results were forwarded to him. No call to us from the GI Dr, but the pediatrician said that the results showed no damage at all. His response to this was, she may be Gluten Intollerant, but you don't have to worry if she gets gluten every once in a while because it won't cause phisical damage.

Interesting idea. I don't know what to think. She was symptomatic until we originally took her off of gluten, then got much better. I wish in retrospect that I had pursued testing then, because somehow I don't feel satisfied that we have the whole story now.

The frustrating part is that my daughter is low in IGA so her blood tests wouldn't even demonstrate a sensitivity to gluten. So all I have to go on are her symptoms and how they coincide with gluten intake. Unfortunately, I am going to get a lot more flack from family now that the tests have shown no problem exists. My husband still had doubts that taking our daughter off of gluten again is the right course of action.

And I still have doubts that she consumed enough gluten and that they took enough biopsy samples (the GI said, well it's spotty but not that spotty) and maybe after putting my daughter through all of that essentially for nothing except so that I could again see the physical and emotional changes that she went through, that I am left feeling like I really wasn't the best advocate for her, and now people are less willing to believe me when I say she has a problem with gluten.

Is there something else that I am missing that could coincidentally cause her symptoms (bloating, smelly mucousy stool, weight loss at one point and no weight gain at another point, undigested food coming out, lethargy, tantrums where she is clingy and not wanting to be touched at the same time, and other symptoms) only when she is consuming gluten? Does anybody have an idea of what else causes this? And what else would respond to diet changes?

scaredparent,

I'm glad to hear that things went as well as they did, though I know it's still not easy to have that sort of testing done on our children. I hope that the tests tell you something, when do you expect to hear back?

As far as my daughter's symptoms, she was fine for weight gain and digestion until 13 months, then she had 2 weeks of runs, then watery stool with undigested food and mucous along with lethargy, weight loss, clingy-ness, and other symptoms for 2-3 months until two days after we stopped feeding her gluten. Then it was a dramatic improvement. She did great until we put her back on gluten, then had screaming fits, back to the runs and moucous, bloated belly, etc, and just maintaining her weight with no gain in 5 months. Until I took her back off gluten this week, and since then she is making formed stool again.

and momof2, I am so glad the biopsy is done! It went well, but the anticipation and the emotional drain is so hard, plus now we are done with the gluten, regardless of the test results! I don't care what my family says about how they are unsure that she has a problem, I am sure and that will have to be enough no matter the test results. But I am still interested to see what the results are.

this is an old thread but I wanted to add something. I had almost the opposite experience of the other posts.

I had a server who checked the ingredients in a Thai food dish and said it all seemed ok except there was "rice flour" in the noodles and that would be wheat. I tried to explain that I thought that "rice flour" was made of rice, but she could not comprehend that flour came from something besides wheat, and she was so concerned that it wouldn't be ok that I didn't think I could convince her to let me order it.

2 days with no solids? It's hard to imagine trying to enforce that with a toddler. I hope that everthing goes well for you and your son today. Post an update on how it went.

Yesterday we took our daughter to children's for an endoscopy. She has been symptomatic but IGA deficient so the blood tests told us nothing. Her symptoms have coincided with adding gluten and abated with removing gluten.

Since I have seen the question of what to expect with having a child get an endoscopy, I though I would share our experience, which may be different from what other people experience:

We got to Children's Hospital at 7:15am, and our daughter has eaten and drank nothing since dinner the night before. We have told her about how she is going to the doctor and is going to sleep while the doctor looks in her tummy. She talks a lot about how she is going to lay on her belly and the doctor will put a blankie on her and she will take a nap.

Had the usual pre-surgical check-in, weight (no gain in 5 month) and height for the anestesia, etc. Change into gown and slippers, which was the part that upset her the most. I think this was a product of being woken up early, not eating and too many unfamiliar things happening and she just wanted to hang onto things that were comfortable and familiar.

Talked to the anesthesia resident that explains that she will get IV anesthesia. Eventually meet the actual anesthesiologist who says she will be getting inhaled anesthesia, not IV, and we discuss the merits of both methods and agreed to inhaled.

As we sit down in each new room she asks if this is where she will be sleeping.

Go into OR and sit holding my daughter on my lap. They ask what flavor she likes and she picks strawberry, so they give her the mask and a q-tip with nasty strawberry scent and tell her to start painting the mask. She paints my shirt a bit too.

They are paging the Dr, who finally shows up and we discuss the number of biopsies she will be taking (this should have happened ahead of time but it has not) and we come to a number that is compromise between her number and mine.

They put the mask on my girl, and she doesn't like that and tries to turn her head away a few times, and I help hold her still and then she starts to look spaced out and relaxes to sleep in about 30 seconds. I help put her on the table and cover her with a heated blanket, then we kissed her. They ask if we want to leave her doll, and we say she's not attached to it, but if she can have her right arm free she will want to suck her thumb, and they agree to do an IV in the left arm.

We waited in stage 2 for her to wake up and be brought to us. About an hour later a nurse walks up carrying our daughter who looks not at all upset or out of it.

She ate a popsicle and drank some juice, and I think it all went down too fast because she started threatening to throw up. This upset her and she cried and heaved for about 20 minutes then was very subdued and clingy for another 45 minutes or so. If we had made her slow down a bit with the juice this might have been avoided, or it can be a natural reaction to anesthesia or perhaps the scope irritated her stomach a bit.

She had her IV removed and changed back into her clothes. By this time she was reaching her limit with the hospital experience and got a little cranky.

We went home at about 11:00, almost four hours after we arrived. Our daughter was very hungry, but we fed her soft foods (as is recommended after the procedure) in small doses to see if her stomach would get upset, which it did not. Soon after getting home she was back to her normal active happy self.

She then devised a game where she was the doctor and gave us strawberry medicine and then fed us gluten. We have not tried to explain all of the details (have not used the word gluten in talking to her) and haven't discussed it much in front of her until we get more answers, so she obviously pays attention to what is going on.

She was energetic for much of the day but she did take and extra-long nap.

I am always impressed at how patient and adaptable our daughter is, and how well she handles unfamiliar situations. She held up really well, and I wouldn't call it a traumatic experience.

We will now wait a week for the results. At this point, I don't have any anxiety about the results. No matter what they show I feel pretty clear about what she should not be eating.

  Smunkeemom said:

mother in law still says that the baby was fine even after she lost 1/2 her body weight

I am so glad that your baby was diagnosed! My daughter was on a downward curve for weight and I fear she would have gotten much worse if we didn't take her off gluten when we did. And I totally know the thinking the baby is fine, I get that from my MIL (retired MD) my mom, my stepmom, and a little bit from my husband. People only see what they want to see!

Well the endo is scheduled for the end of the month. Meanwhile her symproms are getting worse, lot of mucous in the stools, and average of 3 poopy diapers a day, and everyone says, well maybe if we saw the diapers we would understand.... I am going to start saving them for my mom to see.

Thanks everyone for sharing your stories, it's so hard to watch see our babies get so sick.

I like the Dowd & Rogers chestnut and rice flour chocolate or vanilla cake mixes, you can get them at several of the online gluten free sites. Or if you make something with spices or strong flavor like carrot cake you don't notice the bean flour in the gluten free baking flour mixes, I have had good luck with the Joy of Cooking carrot cake recipe and Bob's Red Mill gluten-free baking mix, though for the most part I hear it's hard to make normal recipes come out good with the gluten-free flour mixes.

As far as food goes, I usually don't feel obligated to put out too big of a spread, but you may want to do more. I do a veggie platter or green salad, a fruit platter or fruit salad, gluten-free chips and homemade dip (artichoke dip, guacamole, bean dip...) and maybe something like bbq chicken drumettes (I make bbq sauce so I know it is gluten-free, but there are brands like Annie's that say gluten-free), a gluten-free potato salad (check the mayo and the pickles), and some cheese and rice crackers... I believe that Ben & Jerry's ice cream discloses any gluten ingredients, you can check their web site, I don't know what other brands of ice cream are gluten-free.

I just try and stick with foods that are usually gluten-free so I don't have to make a bunch of expensive gluten-free labeled foods. But I also find that when I do put out gluten-free foods like the pasta and cake most people don't notice the difference (I have fed our nephews gluten-free homemade pepperoni pizza, and they are very picky, and they didn't know the difference!), just don't try and make pasta salad ahead of time because the noodles will get hard in the fridge.

Hope that helps.

My 2 yr old is a suspected Celiac, and she was gluten-free for 9 months, and has been eating gluten again for almost 3 months.

So far the blood tests are inconclusive and she has one gene. She is getting an endoscopy later this month.

Since going back on gluten she has been cranky and clingy, but also has meltdowns where she can't stand to be picked up and yet she really wants to be held. Her belly is bloated, which makes her belly button stick out like the "done" button on a turkey. Her stools had been smelly but inconsistent, and in the past week they are runny, frequent (2-3 day average) and mucousy or nothing but mucous, and she seems to be feeling worse. I want to do the endo and get her back eating gluten-free, but it's going to be harder to go back to gluten-free, I really do dread it now.

How are other kids coping with gluten eating?

My daughter has not been diagnosed. She was sick at 13-16 months (weight loss, chronic runs with undigested food and mucous coming out) until we took her off gluten, and she had a remarkable improvement. We have since put her on gluten for 2 months and she is has really cranky episodes (grimacing, crying, not wanting to be touched but at the same time screaming, "mama, I want you!") and infrequently looser stools, though a little stinkier in general, and sometimes a really bloated pregnant looking tummy. She is maintaining her weight, and she isn't exactly sick.

Her bloodwork came back inconclusive (low IGA/normal TTG), though it was done too soon to be accurate, but with the low IGA I am told it the TTG results can't be trusted. She has one of the two genes, though I didn't find out which.

The GI originally said she was a "textbook case" based on her history (not based on any family history), but she has since "decided" my daughter has no issue with gluten. Based on the fact that she didn't have a severe enough reaction to going back on gluten I guess. I don't really know why she decided there is nothing to my concerns or her past history.

The GI told me we are done testing, but I didn't believe that, so I asked for another blood test, but she said that it wouldn't show anything based on her IGA result. So she said, go for the "gold standard", get the endoscopy, which she scheduled for this week.

My family, my husband, my MIL (retired MD) say that my 2 yr old seems fine, her behavior is normal toddler stuff, just keep her on gluten and wait and see. I cancelled the endo.

But when she is having a hysterical episode it typically seems to be within a couple of hours of heavy gluten consumption (and then I think, I want the endo NOW), though plenty of times she eats gluten and doesn't have an episode.

I want to do the endo, but I am in a position where no one sees what I see, no one is supportive of doing an "invasive procedure", and I am afraid of doing the endo too soon and having it come back negative but still believing that she shouldn't eat gluten. With a toddler that will only sometimes let me gluten-load her, it's hard to know when it would be enough gluten for the test to be accurate.

I know she could just go back off of gluten but it will be a lot harder now that before she knew better, and I really want to get a diagnosis for her.

Meanwhile I have been feeling really crampy and bloated since we have gone back on gluten, and I am starting to wonder if I should consider if I need to be tested.

And she has a 9 month old sister who hasn't eaten gluten yet.

What would you do?

  Quote

Then the patient has to lift one arm straight in the air and the doctor tries to push the arm down to his side. If the patient is strong enough to hold his arm up, there's no reaction to the substance in the glass. If the arm goes down, the patient also will show a reaction to the substance in the glass.

The idea being that the patient doesn't know what is in which vial, and so the reactions are not biased. There are Americans that use this technique as well, which I have heard referred to as "muscle testing." Some people believe it to be a diagnostic tool and some people take it as quackery. I find it all interesting but am not really pro or con myself. But I am a believer that your body intuitively knows on some level what is and isn't good for it, so maybe for some people this would work.

I saw this on America's Test Kitchen and it looked great and happened to be gluten-free.

Open Original Shared Link

You have to set up a free account to get the recipe, but there are some other recipes that are gluten-free, such as their flourless chocolate cake.

If anyone makes this let me know how it comes out.

Scott, that goes along with what I was thinking, that it was too soon, I guess I just went along with the doctor hoping we wouldn't have to keep her on gluten for that long. The only part that bothers me is how dismissive the doctor's assistant was, and she was apparently saying what the doctor told her. I am not satisfied that the tests are telling the whole story.

celiac3270, it's good that your brother knows he has the gene. In my daughters case, she was very symptomatic so I don't yet believe the negative test result.

Does anyone have an estimate on how many people carry the genetic marker for celiac disease and the likelyhood of developing Celiac if you have the gene marker?

I have had someone say to me, it's a genetic disease, if you have the gene you shouldn't consume gluten, I'm not sure if I agree with that, but I'm curious how common it is.

Thanks for the replies

  tarnalberry said:

But really, the fact that she responded to the diet is a test itself.

I agree, it is is compelling, but I keep insisting on a diagnosis maybe because I get tired of the perception that this is some kind of food neurosis that I am imposing on her, and I know it doesn't matter what people think, but I really want to be able to explain it with conviction and a diagnosis, maybe that can't happen but I can try.

Well as if I didn't find all of this testing to be discouraging enough! I really feel like I have to be such an advocate for my daughter to get answers because it would be easy for doctors to write it off when she comes back normal on the antibody tests.

Well I am a bit pissed off and upset. I called the Dr today for the genetic test results, and finally got a message back, yes your daughter did come back positive for one of the two genes for celiac, but since her blood antibody test are negative, that means that she doesn't have it, but has a very slight chance that she could develop celiac later in life.

What? The whole reason that she was tested was because she presented as a "textbook case" as the doctor put it, for celiac disease. Unfortunately she was gluten free for 9 months and not on gluten for a significant length of time (a few weeks) before the antibody tests were done (because I thought and the doctor thought that she would get really sick)

Her one test (I think it was the IGA) came back borderline low so that could be why her TTG looked normal. The last time my husband talked to the doctor she said if the genetic test came back positive she would want to do an endoscopy, and now they say she's fine. I am going to get really pushy with the doctor in a minute when I get someone on the phone.

I really want to get a diagnosis for her.

Arrgh!

I would definitely want to test both kids if it were me. And thoses symptoms are certainly reason enough to test in my book. Are genetic test covered by your insurance?

My DD has come back *inconclusive* on the blood antibody tests and we are waiting for genetic test results and then we will be considering more testing. Our pediatrician thought that the answer to my DD's chronic diarrhea was to give her Metimucil (sp?) to thicken up her stool, which did work, but what did that prove? Didn't really seem like the long-term solution to me!

It's such a hard choice to put them back on gluten, we have done that and have seen how it affects our DD's moods, but I really was ready pursue testing. I think it's a hard question of priorities, trying to get answers, dealing with challenges from family and schools and doctors, or trying to keep them healthy. Will it be harder to put him back on gluten later if you decide to pursue testing?

I wish you luck and health.

In order to test my 2 yr old DD, the family is back on gluten (for 5 weeks now) after been gluten-free for 9 months. And since going on gluten I feel bloated, queasy, tired, crampy, really foggy-headed (I feel slow-witted, my attention span is gone, and I can't read anything all the way through), and I swear my tummy looks huge though no weight gain, but that may just be my postpartum figure... I was thinking maybe I was pregnant again but I'm not. And all I want to eat lately is dairy and sugar and gluten.

All of this time I have been thinking there was more possibly relevant family history on DH's side: Crohn's, Parkinson's, MS, Eczema, Psoriasis, Depression... and I am lacking in genetic family history.

But I feel really out of it since starting gluten. And I have been thinking about the weird rash on my foot, for 2 years off and on, blistery oozy p%$#@# looking bumps, the dermotologist says it's not fungus, but she doesn't say what it is, just try this cortizone, but it doesn't itch, just hurts if the bumps pop open.

In the past 2 1/2 years I have had 2 babies, an appendectomy and gallbladder removal and constant breastfeeding, so it's hard to know what to make of how my body is doing with all of the other stuff.

Meanwhile my DD is cranky, clingy, tired, low-appetite, screaming tantrums, and acting more insecure and passive since being on gluten. Everyone tells me most of it seems like typical toddler stuff, and that's true, but it's all more intense since going back on gluten. She was pretty sick before we went off gluten, losing weight, runs, lethargic, which changed a lot after the diet change, and I haven't seen anything that bad since going back on gluten.

So far the bloodwork has been inconclusive for DD, and any day we should get the results of the genetic tests.

And the GI says if she comes back positive for the genetic tests she will want to do an endoscopy. I wonder if it's too soon for an endoscopy, I sure don't want to do this more than once, and this dr seems to err on the side of testing too soon in my book.

I guess there's nothing to do but wait, how frustrating. My days are a mixture of hope and doubt and dread while waiting for results and watching my DD's symptoms. And if one more person says, wouldn't it be great if the test will show that she doesn't have celiac... I know what they mean yet it feels insensitive somehow. It would be great, but I want to not get my hopes up, because I know what a blow a celiac diagnosis will be if that's what happens, but at the same time I would know how to keep her healthy, that's all that matters.

Just venting/sharing I guess...

At 14 months she had the runs for more than 3 weeks, then stinky dark watery stool for 3 months, sometimes looking undigested and mucousy. She was also losing weight and lethargic, laying around sucking her thumb a lot. When we tried going gluten-free she had an immediate change in stool, and her weight has gone up along with her energy level.

So now we wait for the genetic tests which will be about 1 1/2 weeks.

And if that comes back positive the dr will want to do an endoscopy, but I have concerns about making sure that she consumes gluten long enough for that to be accurate.

Everyone asks about symptoms since consuming gluten, and all I can say is that it is hard to tell. I expected her to get more obviously sick. Her stool has been sometimes formed sometimes not, maybe a little constipated sometimes. The main thing are that she seems more clingy, wants to be held and putting her head in my lap a lot, and really hysterical tantrums (during which she extends her arms to be picked up then starts hitting at me when I get near her), and generally hitting a lot more. Everyone say, well, that's normal at age 2, but it's not typical for her, and it all coincides with gluten consumption. And even with being exceptionally verbal, I really don't believe she can tell me how she really feels in words. But overall she is doing ok still.

My 2 yr old DD was gluten-free for 9 mos, now we are pursuing testing. She had gluten for about 3 weeks (I know, not very long...) and then had tests, her IGA came back at 14, which the Dr said was the absolute bottom of the normal range. And her TTG came back normal, I didn't get a number. So either she is not Celiac or the low IGA makes the TTG look normal, is that right? Plus it may be too soon to tell?

We are still waiting on the genetic tests. Meanwhile, my DD has been having several screaming tantrums, very unusual, but she is 2 so it's hard to know, and sometimes her belly looks pretty bloated (pregnant looking) but it's hard to tell for sure. So I guess we continue gluten and run through more test again later.

Anyone have feeback on the results? Am I understanding them? My husband talked to the Dr.

Hi,

My 2yr old DD will be getting blood tested soon, and she has been gluten-free for about 9 months. Does anyone know how long she will have to consume gluten, and how much gluten to get an accurate test result? I am also trying to think of what I will give her that she will not notice as something new and exciting and continue to ask for after the testing is done, and I want it to be something that will not contaminate my house and kitchen implements with gluten, anyone have any suggestions?

Thanks,

S. Johnson

My 2yold DD is seeing a new GI Dr on Monday, and we will be discussing testing. I keep reading about how only a few labs are accurate for the blood tests, does anyone know which labs in the US? And which test should she be getting?

My DD is also gluten-free for 9mos, so we won't be doing testing this time, just getting info.

Thanks,

S. Johnson

My 2 yr old started having symptoms at 14 months, and after 3 months of symptoms the peditrician suggested we go gluten-free. Instant change, so that was reason enough to suspect Celiac.

I had been told that the testing would require scope and I was not ready to do at that time. Didn't get info on blood testing. Now that I have more info and she is older, I want to pursue testing.

But we have been gluten-free for about 9 months, though there is the possibility that she was getting some cross-contamination from cast-iron pans and a few wooden implements (still figuring all of this out!), she has had some symptoms lately that make me think that she could have gotten some gluten.

So I don't know if a blood test would show any antibodies at this point.

And I keep reading about how only 5 labs are accurate for blood tests, which labs?

And how do I make sure that the right tests are done, what should they be testing for?

If I have to put my DD back on gluten, for how long, and how much gluten?

This is hard because I don't want to make her sick if I can help it, but for preschool and with the constant battle with my family over food when DD goes to their houses, it would help to have a concrete diagnosis.

Thanks!

S. Johnson