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Toddler With Suspected Celiac
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Hi all. I am mom to a 20 month old hellion whom I suspect may have Celiac's. Here are the basics of our situation:

-DS has always been fussy since birth, and a horrendous sleeper; at 20 months, he has yet to STTN or even close to it

-Is a "hot sleeper"

-Exclusively breastfed until around 9 months, when he started taking in small amounts of solids, though major solids consumption didn't start until he finally cut his molars and canines, around 16 months.

-Since starting solids, his weight gain has plummeted and he has gone from the 80th percentile at 6 months to the 8th percentile at his 18 month appointment

-Growth has also plummeted, going from the 90th percentile at his 6 month to the 50th percentile at his 18 month appointment

- Has never had great stools, but they were formed, on and off, until just before 18 months, when he had two stomach bugs in a row. Since then, he has had persistent diarrhea. He does not drink juice and I have cut way back on his fruit consumption, which helped some, but did not fix the problem

- Since the stomach bugs, he has demonstrated symptoms of secondary lactose intolerance when eating too much cheese or very fresh cheeses, which has worsened recently. I never regularly gave him fresh milk, because of his general unwillingness to drink it; however, a week ago and , he drank another child's milk, and since then, he has been unable to tolerate any dairy without serious diarrhea.

-Stools are usually very pale and greasy

-Pediatrician, at my insistence that something is wrong, has tested him for a number of intestinal parasites, c. diff, giardia, made me eliminate all fruit except apples and bananas for a week, and tested him for cystic fibrosis, and finally started the referral process for a pediatric GI about 3 weeks ago, and I finally have an appointment.

-Being treated for sensory issues, and OT says he has poor muscle tone

I got tired of waiting for an appointment, and, after the milk incident, cut all wheat out of his diet for the last week - we haven't seen any real improvement, which is discouraging. I've tried restricting his dairy to lactose-free cheeses, but that seems to aggravate him still, and I suspect that he may also have a fructose sensitivity, and that pears are the culprit for why his diapers started getting better and then backtracked in the last few days. Since we have our appointment now, set for the 8th, I am going to re-introduce wheat products.

However, I'm very concerned about the testing process, especially since so many of you seem to indicate that testing is very unreliable in children under 2. I do not want to unnecessarily subject him to a biopsy; however, I realize that this may be the only way to get a positive dx, but if it's likely to come back negative at this time, I don't know if it is worthwhile to do it. In general, I'm just feeling very lost, and unsupported - I know that my husband and the grandparents think I'm probably overreacting, since he is such a bright, active boy, and there is no family history of Celiac's (though there is a history of thyroid issues on my side) but I just feel in my gut that something is wrong, and the only thing that fits his symptoms is Celiac's. I would love some guidance, or encouragement; I am willing to make any dietary and lifestyle changes necessary, I am a trained chef turned SAHM so I am willing to do what needs to be done to accomodate him, and I just would love to have other people tell me I'm not being a crazy mom.

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Hiya,

sounds similar to what we went through - down to the cystic fibrosis testing. There is a higher false negative rate on the bloods that on the biopsy - however biopsies like anything else -can be false negative too.

If you do want him to be tested you need to put him back on gluten (remember that just cutting out wheat does not mean that he isn't eating gluten which may be why he isn't getting any better if it is coeliac)

My son had a biopsy at 18 months - after negative blood tests - it came back borderline for coealic -not enough for a diagnosis - but not able to rule it out either, we went gluten free that day straight after the endo, at the end of the day- I knew we had nothing to lose, we had done all the tests - they were borderline, I had two choices - keep him eating gluten or go gluten free and see if it made a difference. He vomited every single day until we went gluten free and then stopped and that was it, no more daily vomiting. He still has issues - he is lactose intolerant and I feel I am missing something else food wise, but there is no denying that gluten was making him awfully ill.

I personally think that it is best to do all the testing while you can, if he does go gluten free - and he does have issues with coeliac he may never be able to tolerate a gluten challenge as symptoms often get worse the longer you are off it. And that is ok - if you are ok with not having a diagnosis - but for me, I fine it very frustrating not having an official diagnosis.

do you know if there are any other autoimmune diseases in your family at all? Diabetes 1, Lupus, RA etc??

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Hiya,

sounds similar to what we went through - down to the cystic fibrosis testing. There is a higher false negative rate on the bloods that on the biopsy - however biopsies like anything else -can be false negative too.

If you do want him to be tested you need to put him back on gluten (remember that just cutting out wheat does not mean that he isn't eating gluten which may be why he isn't getting any better if it is coeliac)

My son had a biopsy at 18 months - after negative blood tests - it came back borderline for coealic -not enough for a diagnosis - but not able to rule it out either, we went gluten free that day straight after the endo, at the end of the day- I knew we had nothing to lose, we had done all the tests - they were borderline, I had two choices - keep him eating gluten or go gluten free and see if it made a difference. He vomited every single day until we went gluten free and then stopped and that was it, no more daily vomiting. He still has issues - he is lactose intolerant and I feel I am missing something else food wise, but there is no denying that gluten was making him awfully ill.

I personally think that it is best to do all the testing while you can, if he does go gluten free - and he does have issues with coeliac he may never be able to tolerate a gluten challenge as symptoms often get worse the longer you are off it. And that is ok - if you are ok with not having a diagnosis - but for me, I fine it very frustrating not having an official diagnosis.

do you know if there are any other autoimmune diseases in your family at all? Diabetes 1, Lupus, RA etc??

I know that there is more to gluten than wheat, including rye and barley, and that to truly cut out gluten, we've got some work to do around here to decontaminate the kitchen and make sure none of our other household products have any gluten in them. I only took cut wheat out of his diet for that week because I was frustrated waiting for an appointment with the GI - it'd been over 2 weeks since we started the referral process, and in the meantime, a friend had accidentally let him drink a bunch of milk once time and he'd had diarrhea for days - before that, he had been tolerating cheese and yogurt fine, and since then, he can't seem to handle any dairy. Grr. I was hoping maybe we'd see a bit of improvement in his diapers if he was off wheat for a few days...however, with the fructose and lactose issues, that sabotaged us. However, he is back on wheat as of today - I figure I might as well use up my flour while I can.

We really don't have any diagnosed autoimmune issues other than that my mom and grandmother both had to have their thyroids removed and get put on synthroid, during their childbearing years. So far, mine seems to be holding up, but I do have a diagnosis of IBS, which I know could mean I have some gluten issues. DH's family has a history of type II diabetes, weight issues, and gallstones, but I don't know if those would have any bearing on Celiac. However, we are both of Northern European descent, so I know the statistical likelihood of us carrying the genes are higher.

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That was a huge thing for me, one day I was fine with dairy - the next I couldn't tolerate it at all, I am fine with dairy now that I am gluten-free. The problem with this kind of testing is it can take ages, it took over a year from the time we first went to the Paed GI for my little one to the time he gave him an endo. :( I feel your pain - it is very hard watch your child sick and knowing that if you just took him of Gluten he may be ok. Good luck with it.

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All be it "alternative", applied kinesiologists can do non-invasive

muscle testing to help you determine what to avoid in the interim.

We visited with a NAET practioner team - this was our first intro. to

"alternative" medicine & we were desperate. I can't imagine where we'd

be sitting if we hadn't given it a go. I know some people may not

be open to this - I'm just sharing what has helped my family.

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Well, we have our appointment with the pediatric GI on Tuesday afternoon. Hopefully, we will have some useful information to work with soon, fingers crossed. I am hoping that we'll do some bloodwork at least, so that we can check for antibodies and maybe run a genetic test.

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Well, we had our appointment today, and Celiacs is at the top of the pediatric GI's list. He mentioned a couple of other things, Hirschsprung's disease and eosiniphilic gastroenteritis, but I looked at those and the symptoms just don't sound like him at all. We took a lot of blood today and will hopefully be getting our results back within a week.

Unfortunately, it seems that he is unwilling to even consider a diagnosis without a biopsy and is pushing hard for one fast. I asked to at least get our blood work results before we do the biopsy, so it is scheduled for the first week of June. At least by next week, we should start to get some answers.

I know that I've been expecting to hear that he was probably Celiac, but I can't help but feel a little shellshocked hearing it from a doctor. He told me that my son should weigh 28 lbs, when he just barely has finally inched past the 21 lb mark at 21 months.

I know that we can do a gluten free lifestyle, but I'm still mourning right now. As a chef from a foodie family, food traditions are very important. It kills me that I'll never get to make pierogies and Polish easter soup with rye bread for him. And that he'll be "that kid" at birthday parties. And have a hard time finding safe food when we travel. Things I know many of you have dealt with and are managing just fine, but right now, I just am heartbroken about it.

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Well, we had our appointment today, and Celiacs is at the top of the pediatric GI's list. He mentioned a couple of other things, Hirschsprung's disease and eosiniphilic gastroenteritis, but I looked at those and the symptoms just don't sound like him at all. We took a lot of blood today and will hopefully be getting our results back within a week.

Unfortunately, it seems that he is unwilling to even consider a diagnosis without a biopsy and is pushing hard for one fast. I asked to at least get our blood work results before we do the biopsy, so it is scheduled for the first week of June. At least by next week, we should start to get some answers.

I know that I've been expecting to hear that he was probably Celiac, but I can't help but feel a little shellshocked hearing it from a doctor. He told me that my son should weigh 28 lbs, when he just barely has finally inched past the 21 lb mark at 21 months.

I know that we can do a gluten free lifestyle, but I'm still mourning right now. As a chef from a foodie family, food traditions are very important. It kills me that I'll never get to make pierogies and Polish easter soup with rye bread for him. And that he'll be "that kid" at birthday parties. And have a hard time finding safe food when we travel. Things I know many of you have dealt with and are managing just fine, but right now, I just am heartbroken about it.

I don't know how to do the huggy things but here's a big hug.

Go ahead and mourn it. We all do.

Also, your ped has a point... in young children they are less likely to be positive on blood work. So, a scope may be the best way to get a definitive answer. Ultimately, a gluten-free trial is the best way to know.

And I hate to bring this up now... but you and his Dad need to be tested too. It is genetic. It's much better to do it now than later - because if you are gluten-light it can lessen the chance of an accurate test.

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I don't know how to do the huggy things but here's a big hug.

Go ahead and mourn it. We all do.

Also, your ped has a point... in young children they are less likely to be positive on blood work. So, a scope may be the best way to get a definitive answer. Ultimately, a gluten-free trial is the best way to know.

And I hate to bring this up now... but you and his Dad need to be tested too. It is genetic. It's much better to do it now than later - because if you are gluten-light it can lessen the chance of an accurate test.

I guess I don't see the point of us getting tested at this juncture. I hate to base it on this, but endoscopies are expensive and we each have a deductible with our insurance to meet, plus I'm currently 27 weeks pregnant so being sedated for an upper GI isn't even a good option for me. If my son goes gluten free, we'll be doing gluten free with him out of solidarity. So I'm going to pay close attention to my own digestion, and ask my husband to do the same - we both have some issues that could be explained by gluten, and we may get a genetic test if that's warranted, to see who might carry one of the associated Celiac genes. I strongly suspect that I may, given that I have that murky diagnosis of "irritable bowel syndrome", but my husband may too. Either way, if we feel better on a gluten free diet, we'll be sticking to it. We've discussed doing a Paleo diet for years anyways, so this might be a good time to go for it.

I worry for this new baby too based on the genetic suceptibility of Celiac, but based on the results of our genetic testing, I'll try to figure out what I want to do after they get here.

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I understand your hesitation.

All I can say is that the best defense is a good offense - and the more you know about the parents' Celiac status the easier it is to build a case for kids.

If one of you come up positive on serological testing, and your son doesn't, a doctor will be more likely to take Celiac seriously. Ditto for the baby you're expecting. What if your son's test come up in that grey range - something off but not definitive? What if his biopsy is negative but he shows a positive reaction to the gluten-free diet?

There's also the possibility that if you go off gluten as a show of solidarity you will discover you can't have it for your own health reasons - you wouldnt be the first it happened to. Then, you can't challenge without serious discomfort, especially pregnant.

You may not see the need for testing to confirm what you know by your body's reaction, but your kids may need YOUR diagnosis.

They don't automatically biopsy unless you have symptoms or come up positive on serological testing. They wouldn't biopsy you while pregnant.

All I can offer is my own experience. It is very hard to gluten someone up for testing when your house is gluten-free.

If you are concerned about the baby re: breast feeding you can always go on a gluten-free diet and provide gluten-free milk.

Genetic testing is not an assurance you do or do not have Celiac. People with the genes don't have it, and people without the genes do have it. Most labs report the most common genes found in the western U. S., and some people have genes found primarily from other areas. Ensure your genetic test shows all genes found - alpha and beta.

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I understand your hesitation.

All I can say is that the best defense is a good offense - and the more you know about the parents' Celiac status the easier it is to build a case for kids.

If one of you come up positive on serological testing, and your son doesn't, a doctor will be more likely to take Celiac seriously. Ditto for the baby you're expecting. What if your son's test come up in that grey range - something off but not definitive? What if his biopsy is negative but he shows a positive reaction to the gluten-free diet?

There's also the possibility that if you go off gluten as a show of solidarity you will discover you can't have it for your own health reasons - you wouldnt be the first it happened to. Then, you can't challenge without serious discomfort, especially pregnant.

You may not see the need for testing to confirm what you know by your body's reaction, but your kids may need YOUR diagnosis.

They don't automatically biopsy unless you have symptoms or come up positive on serological testing. They wouldn't biopsy you while pregnant.

All I can offer is my own experience. It is very hard to gluten someone up for testing when your house is gluten-free.

If you are concerned about the baby re: breast feeding you can always go on a gluten-free diet and provide gluten-free milk.

Genetic testing is not an assurance you do or do not have Celiac. People with the genes don't have it, and people without the genes do have it. Most labs report the most common genes found in the western U. S., and some people have genes found primarily from other areas. Ensure your genetic test shows all genes found - alpha and beta.

Well, I have my own GI, and depending on what results we get with testing, I'll probably be following up with them. But I guess my point is that since most GI's won't give you a diagnosis without a scope, and there's really no way for me to not go gluten free or very lite with DS, since I'm a SAHM and take cross-contamination very seriously, I don't know how we would get around that issue, pursuing a diagnosis for me, since like we both said, getting scoped right now is not an option, and won't be until some time after August.

I'm not concerned for the new baby until after they start solids. Even though I consumed plenty of gluten, my son gained like a champ from birth to somewhere between 6-9 months,around the time that solids started to become a regular part of his diet, and he was pretty much exclusively breastfed before that (we had one hiccup at 6 months when I temporarily lost my milk from pneumonia and the meds the were giving me). It's only since around 9 months that weight gain really has fallen off...he's gained slightly over a pound in the last year. So especially given that I will (theoretically) be eating gluten free, I'm more concerned about what we do to introduce gluten to the diet of this new baby, especially if we have a known genetic suceptibility and they have the same genes, and we have to go through testing with the new LO for all the same reasons as DS - this board has made me realize how much hard work it is to get an official diagnosis, and how sick our kids really have to be to get one. So it's frustrating to consider that I might have to make this new baby sick in order to protect them.

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You could do serology now, scope after the baby comes.

You may choose to stop at serology - who knows.

Ask your ped what s/he would give as a dx if tests come up inconclusive, there was a positive gluten-free trial/challenge but you or hubs were sero positive (no scope). You might be surprised.

You are correct you'll end up gluten light. It just happens. I tried to shove gluten down my son's throat for testing (gluten-free house) and it was hard to get that much in him, daily.

Some babies seem affected by gluten in breast milk, others don't. Sometimes it's dairy.... Each baby is different, but you know that. At least you know what to look for.

There are differing opinions and studies about introducing gluten. One will say wait, one will say do it...it's a call you have to make as a parent. Search PubMed and see what you find. There were posting on here about it, too.

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You could do serology now, scope after the baby comes.

You may choose to stop at serology - who knows.

Ask your ped what s/he would give as a dx if tests come up inconclusive, there was a positive gluten-free trial/challenge but you or hubs were sero positive (no scope). You might be surprised.

You are correct you'll end up gluten light. It just happens. I tried to shove gluten down my son's throat for testing (gluten-free house) and it was hard to get that much in him, daily.

Some babies seem affected by gluten in breast milk, others don't. Sometimes it's dairy.... Each baby is different, but you know that. At least you know what to look for.

There are differing opinions and studies about introducing gluten. One will say wait, one will say do it...it's a call you have to make as a parent. Search PubMed and see what you find. There were posting on here about it, too.

I will definitely ask at our follow up visit. I do appreciate the feedback - it's all a little overwheming, as I'm sure you understand, and I'm trying to do everything "right". All the while, I feel so unsupported from all sides - DH is at least coming around to the idea that we'll have to stop eating gluten at home, but it'll be up to him to avoid it at work, which I don't think he will, so at least he'll get his daily "dose" if it takes us a while to pursue testing.

Meanwhile, I need to find a new pediatrician, because ours didn't take me seriously at all, so I felt, since she ignored the height and weight drop off, and refused to do blood work for DS at all for Celiac's, though she did insist we do a fruit elimination diet, a CF test, and a parasite test on him before finally referring to a GI. My IL's seem to want to believe it could be anything but Celiac, to the point of suggesting that maybe we caused his issues by some other means - I know that they're not trying to be hurtful, but it's going to take some effort for them to "get it". And my mom really doesn't want to hear that maybe our family is a carrier for Celiac's - she and my grandmother both developed some sort of thyroid issue in their 30's and my mom had to have hers surgically removed, I don't know the official diagnosis, but I know there could be a relationship there, and she is not going to be happy with me if my tests confirm a genetic diagnosis, I just know it.

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Lol, yeah. Familial denial. Been there. Am there. We've all been there.

And yes, there's a thyroid and diabetes and gallbladder link.

I suggest not worrying about them - just worry about the kids, you, and hubs. Quite frankly you can't make them do anything, all you can do is give them info and let them make choices.

If one of them gets sick enough, they'll listen. Maybe.

Yes, it's overwhelming. But just breathe deep and you'll get there.

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Timing of gluten intake in infant nutrition and risk of celiac disease autoimmunity.

Studies have shown that breast feeding at-risk infants at the time of gluten introduction may delay or prevent the development of celiac disease. The risk of developing celiac disease is reduced by prolonged breast-feeding, introduction of gluten during breast-feeding, introduction of gluten in the right
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I've read that, but unfortunately, it didn't seem to help us, since DS was breastfeeding when gluten was introduced...I can't pinpoint exactly when, maybe around 8 or 9 months, but I continued (and continue) to breastfeed him, and unfortunately it doesn't seem to have protected him in this case (and I am well aware that doesn't mean that breastfeeding still isn't the best thing for him).

MIL told me tonight that apparently ulcerative colitis runs on her mother's side of the family (she also is the one whom the gall bladder issues come through). Don't know why that didn't get mentioned before. And the pediatric GI's office unfortunately called and told me that the one vial of blood we were worried wouldn't be enough clotted, so we have to come back in for another blood draw tomorrow. My poor kiddo, he's going to be so traumatized. Ugh.

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I've read that, but unfortunately, it didn't seem to help us, since DS was breastfeeding when gluten was introduced...I can't pinpoint exactly when, maybe around 8 or 9 months, but I continued (and continue) to breastfeed him, and unfortunately it doesn't seem to have protected him in this case (and I am well aware that doesn't mean that breastfeeding still isn't the best thing for him).

MIL told me tonight that apparently ulcerative colitis runs on her mother's side of the family (she also is the one whom the gall bladder issues come through). Don't know why that didn't get mentioned before. And the pediatric GI's office unfortunately called and told me that the one vial of blood we were worried wouldn't be enough clotted, so we have to come back in for another blood draw tomorrow. My poor kiddo, he's going to be so traumatized. Ugh.

Oh no, poor guy.

You may contact those centers and see if there's more research available.

Yeah, it's amazing what you start learning about people who aren't "sick", right? Just wait....it will getter interesting.

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Just asked my mom about her thyroid issues - she had a goiter and they told her that her white blood cells were attacking her thyroid at the time. Now this being the late 70's, they never told her an official diagnosis, but from what I'm reading, it sounds an awful lot like Hashimoto's, which seems to be the primary related thyroid issue to Celiac from what I'm reading. All the more reason for me to get tested - I'd rather not end up with the issues my mother and grandmother had with their thyroids.

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Actually, it sounds more like Graves to me - the hyperthyroid autoimmune thyroid disease. My aunt had the same thing - goiter and most of it removed. She was hyper at the time, now she hypo.

Both Graves and Hashis are associated with Celiac. I think Hashis is just more prevalent (hypo in general is more prevalent, I believe)..

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Actually, it sounds more like Graves to me - the hyperthyroid autoimmune thyroid disease. My aunt had the same thing - goiter and most of it removed. She was hyper at the time, now she hypo.

Both Graves and Hashis are associated with Celiac. I think Hashis is just more prevalent (hypo in general is more prevalent, I believe)..

Well, I know my mom's goiter developed during pregnancy, which is apparently common with Hashimoto's, and from the symptoms she's described, she always told me that it was hypothyroid, not hyper, which is why I assumed Hashi's.

http://www.mayoclinic.com/health/goiter/ds00217/dsection=causes

But be that as it may, it's definitely food for thought. I'm hoping to get back our bloodwork results soon - they told me it would take about a week, which would be tomorrow, but with our one vial clotting and having to get redrawn on Thursday, that would mean we might not hear anything until the end of the week. And tomorrow will be exactly two weeks until our endoscopy. I am just hoping for some results that at least make me feel like the scope is a good idea, before I go through with it, though I know that there's always the possibility of false negative.

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Well, I know my mom's goiter developed during pregnancy, which is apparently common with Hashimoto's, and from the symptoms she's described, she always told me that it was hypothyroid, not hyper, which is why I assumed Hashi's.

http://www.mayoclinic.com/health/goiter/ds00217/dsection=causes

But be that as it may, it's definitely food for thought. I'm hoping to get back our bloodwork results soon - they told me it would take about a week, which would be tomorrow, but with our one vial clotting and having to get redrawn on Thursday, that would mean we might not hear anything until the end of the week. And tomorrow will be exactly two weeks until our endoscopy. I am just hoping for some results that at least make me feel like the scope is a good idea, before I go through with it, though I know that there's always the possibility of false negative.

Yes, if it was hypo then it was hashis.

Did you ever check to ensure they ordered a full panel of Celiac tests, not just one or two? Sometimes they do that and it's very unfortunate because you're only getting a partial picture. Since he has to go back....would be worth knowing IMO.

I won't tell not to worry or stress - that's just how it is. But you will get through it.

As I type that I wonder what I'm going yo do with my kid since he was just tested for gluten antibodies in December and now he's showing symptoms. Sigh. Go milk free til next December?? Ugh. It's amazing that even when you are aware of the potential problem there's still no answer.

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In the early stages of Hashi's the thyroid can be over active. The thyroid is just under attack from the immune system and reacting while it still can produce. At a certain point, the thyroid loses the batlle and is always hypoactive (underactive).

So a person can have symptoms of overactive and still have Hashimoto's Thyroiditis which is mostly thought of as underactive. Unfortunately for me a lot of doctors miss this diagnoses (especially if you are younger~ early 20's or under). I had to work with an endocronologist.

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Sigh. I just got a call back from the pediatric GI's office and it was like pulling teeth to get details...at first, all she was going to tell me was that all his tests came back "normal", without even explaining further. So then she told me they did a CBC, normal, liver function was normal, thyroid levels were normal, Celiac panel was normal. I asked about the celiac panel and she told me that all the results were normal, again, and so I specifically asked her about the two things I see referenced a lot, ttG and IgA, and she told me his results were a 2 and a 67, respectively, so, within normal ranges. I didn't know off the top of my head what else to ask about specifically. Apparently they did not to any genetic testing, so I'll probably have to ask about that, but we aren't scheduled to see the Dr. again until the endoscopy.

But now I'm back to feeling frustrated, because if his bloodwork is all negative, what are the odds that the scope will come back negative too? His poor little belly has been so swollen the last few days, and we've changed our pattern of chronic diarrhea to intermittent diarrhea and constipation, which is a totally new thing. And the more solid poops are all the "sandy" texture that everyone complains about. I just don't know how I'm going to get people to take this seriously without an actual diagnosis. Sigh.

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Sigh. I just got a call back from the pediatric GI's office and it was like pulling teeth to get details...at first, all she was going to tell me was that all his tests came back "normal", without even explaining further. So then she told me they did a CBC, normal, liver function was normal, thyroid levels were normal, Celiac panel was normal. I asked about the celiac panel and she told me that all the results were normal, again, and so I specifically asked her about the two things I see referenced a lot, ttG and IgA, and she told me his results were a 2 and a 67, respectively, so, within normal ranges. I didn't know off the top of my head what else to ask about specifically. Apparently they did not to any genetic testing, so I'll probably have to ask about that, but we aren't scheduled to see the Dr. again until the endoscopy.

But now I'm back to feeling frustrated, because if his bloodwork is all negative, what are the odds that the scope will come back negative too? His poor little belly has been so swollen the last few days, and we've changed our pattern of chronic diarrhea to intermittent diarrhea and constipation, which is a totally new thing. And the more solid poops are all the "sandy" texture that everyone complains about. I just don't know how I'm going to get people to take this seriously without an actual diagnosis. Sigh.

Get a copy, then post them. You need ranges.

And this is why people scope - because kids are notoriously negative on blood work in spite of horrible symptoms. Sometimes they find it on scope when it never shows up on blood work.

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Get a copy, then post them. You need ranges.

And this is why people scope - because kids are notoriously negative on blood work in spite of horrible symptoms. Sometimes they find it on scope when it never shows up on blood work.

I will call back the office and ask if they can mail or e-mail me a copy. Thanks.

I guess it does make me feel better about agreeing to have the scope so that they at least get a chance to look at what's going on in there. And then we will be definitely going gluten-free to see if it makes a difference, regardless of the results. I'm using up my pantry as we speak, so that it will be relatively easy to just decontaminate the kitchen when we're ready.

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    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
    • I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!
    • Sorry ! I have never cruised before.  Just wanting to follow your topic.  Good luck! Have a great,  safe vacation.  
    • Hi there, I hope you're all having a good day! I'll be heading on a week-long Carnival cruise shortly and had a few questions: -What is the tipping protocol? I've prepaid gratuities, but feel like the food request will warrant something extra. Should I tip the headwaiter? Hostess? Regular waiter? Chef? Those cooking at, say, the sandwich or pasta bars? If so, how much is appropriate, and should I tip at the beginning of the cruise, the end, or split it up? -It looks like the main dining room will be closed during lunch hours on most days. Any recommendations on safe bets for midday meals? I'll be on the Carnival Sunshine, for what that's worth. Thank you so much for any information you can share!  
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