Really Confused

[blossom3]

Hi all! I am a new member, but I was here years ago when my two oldest kids were diagnosed. I guess that was about 6 or 7 years ago now--they are 18 (son) and 16 (daughter).

Interestingly, the reason they were both diagnosed is because of our suspicions about our youngest who was just a baby then.

I appologize because there is some history, but I'll try not to be too wordy here LOL.

When our baby was still in diapers, she would have BMs that were sooooo grainy--like she'd been eating out of the sand box (which we ruled out right away LOL). It was so hard cleaning her bottom because it was so abrasive and hard to clean off. Anyhow, our doctors didn't really have any answers. This went on until she was potty trained. As a toddler, she had quite a large, distended belly (like her older brother had as a toddler), and an intermittent itchy rectum/anus. Anyhow, I had a friend who was familiar with celiac and she told me about it, which sent me to my doctor for testing. This brought us to my son's history of tummy troubles etc., and we decided to get him tested first--positive (blood and biopsy). This led to the diagnosis of my other daughter (silent celiac). Anyhow, we subjected my youngest, she was about 3 at the time, to getting the blood work and biopsy done--both negative. We found out how difficult it was to get an accurate dx with kids that young, so waited until she was 5. By this time, she still had a bit of a distended belly and was getting stomach aches that would end in her vomiting a few times and perhaps (but not always) having a somewhat explosive BM. Then, almost as quickly as it started, it would end and you'd never know she hadn't been feeling well. So, this would happen 3-6 times a year.

Then, it almost seemed that she wasn't having the problems any more--they seemed to taper off and didn't really have more than, maybe, once that year. So, now she is 7, and since about the middle of January, she has had a stomach ache every single day! Some days are worse than others, and she describes it as a wave with it almost always being there, but peaking in severity throughout the day. She can be in so much pain, and then, 5 minutes later, be running around feeling fine. I know when she is feeling badly because she doesn't want to eat any of her favorite foods, her cheeks are flush, and she often ends up missing out on fun activities. She says that if she drinks enough water, she can stop herself from throwing up.

FYI, she tested positive for the gene when we had her tested at 3.

I know, because of my son's amazingly varied symptoms, that some of the other things she has going on could be related. She is a bit small for her age (I'm not big either though, but both my son and daughter were stunted until going gluten-free). She feels like she has to urinate frequently and goes through bouts of insatiable hunger and thirst (she was tested for diabetes).

Anyhow, we just went through more excruciating blood tests, and it looks like she tested negative again. I'm beside myself with frustration for the poor little thing. She says that she would happily miss out on hot lunch at school (she loves that) if we found out she had celiac and had to go gluten free. You know they aren't well when they'll give up pizza LOL.

Wow--I was much wordier than I had intended--sorry!

Anyhow, does this pattern jig with anyone?

What are the chances? Neither myself or my husband have celiac---could all 3 of our children really have celiac????

Any insight would be welcome. Thanks in advance:)

[frieze]

Hi all! I am a new member, but I was here years ago when my two oldest kids were diagnosed. I guess that was about 6 or 7 years ago now--they are 18 (son) and 16 (daughter).

Interestingly, the reason they were both diagnosed is because of our suspicions about our youngest who was just a baby then.

I appologize because there is some history, but I'll try not to be too wordy here LOL.

When our baby was still in diapers, she would have BMs that were sooooo grainy--like she'd been eating out of the sand box (which we ruled out right away LOL). It was so hard cleaning her bottom because it was so abrasive and hard to clean off. Anyhow, our doctors didn't really have any answers. This went on until she was potty trained. As a toddler, she had quite a large, distended belly (like her older brother had as a toddler), and an intermittent itchy rectum/anus. Anyhow, I had a friend who was familiar with celiac and she told me about it, which sent me to my doctor for testing. This brought us to my son's history of tummy troubles etc., and we decided to get him tested first--positive (blood and biopsy). This led to the diagnosis of my other daughter (silent celiac). Anyhow, we subjected my youngest, she was about 3 at the time, to getting the blood work and biopsy done--both negative. We found out how difficult it was to get an accurate dx with kids that young, so waited until she was 5. By this time, she still had a bit of a distended belly and was getting stomach aches that would end in her vomiting a few times and perhaps (but not always) having a somewhat explosive BM. Then, almost as quickly as it started, it would end and you'd never know she hadn't been feeling well. So, this would happen 3-6 times a year.

Then, it almost seemed that she wasn't having the problems any more--they seemed to taper off and didn't really have more than, maybe, once that year. So, now she is 7, and since about the middle of January, she has had a stomach ache every single day! Some days are worse than others, and she describes it as a wave with it almost always being there, but peaking in severity throughout the day. She can be in so much pain, and then, 5 minutes later, be running around feeling fine. I know when she is feeling badly because she doesn't want to eat any of her favorite foods, her cheeks are flush, and she often ends up missing out on fun activities. She says that if she drinks enough water, she can stop herself from throwing up.

FYI, she tested positive for the gene when we had her tested at 3.

I know, because of my son's amazingly varied symptoms, that some of the other things she has going on could be related. She is a bit small for her age (I'm not big either though, but both my son and daughter were stunted until going gluten-free). She feels like she has to urinate frequently and goes through bouts of insatiable hunger and thirst (she was tested for diabetes).

Anyhow, we just went through more excruciating blood tests, and it looks like she tested negative again. I'm beside myself with frustration for the poor little thing. She says that she would happily miss out on hot lunch at school (she loves that) if we found out she had celiac and had to go gluten free. You know they aren't well when they'll give up pizza LOL.

Wow--I was much wordier than I had intended--sorry!

Anyhow, does this pattern jig with anyone?

What are the chances? Neither myself or my husband have celiac---could all 3 of our children really have celiac????

Any insight would be welcome. Thanks in advance:)

1) you don't need a dx to take her gluten free.

2) get all lab results and compare, has there been an up tick that still remains in the normal range?

3) Are you short for your gene pool, ie your sibling group, compared to your parets' hgt etc?

Good luck

[blossom3]

Well, our whole family is on the shorter side, so that's one of the reasons we were not surprised that our kids weren't particularly big either. But, as soon as my son started slipping from the 25-50th percentile to the 10th (when he was 4 years old), we started looking into things. Funny, my doctor did't even mention celiac at the time, and it would be 8 years before all the puzzle pieces fell together for a diagnosis.

I don't actually have the lab results for my little one--but they are in the chart. I guess I could ask for a copy of them. Her doctor knows nothing about celiac and she is going to a pediatrician on March 1st. I'm hoping he/she has a bit more knowledge of the disease.

My husband and I are going to start an elimination diet after she sees the ped. We'll start with dairy, then wheat, then ultimately gluten. It's just hard to believe that her symptoms can be so uncomfortable yet have nothing show up in the bloodwork--hmmmmm.

[xjrosie]

Well, our whole family is on the shorter side, so that's one of the reasons we were not surprised that our kids weren't particularly big either. But, as soon as my son started slipping from the 25-50th percentile to the 10th (when he was 4 years old), we started looking into things. Funny, my doctor did't even mention celiac at the time, and it would be 8 years before all the puzzle pieces fell together for a diagnosis.

I don't actually have the lab results for my little one--but they are in the chart. I guess I could ask for a copy of them. Her doctor knows nothing about celiac and she is going to a pediatrician on March 1st. I'm hoping he/she has a bit more knowledge of the disease.

My husband and I are going to start an elimination diet after she sees the ped. We'll start with dairy, then wheat, then ultimately gluten. It's just hard to believe that her symptoms can be so uncomfortable yet have nothing show up in the bloodwork--hmmmmm.

I know where you're coming from. I have three daughters, two of which were diagnosed with Celiac. Funny thing is, they didn't have any symptoms. The reason they were tested is because my youngest has diabetes type 1 and she kept getting really low blood sugars (and her endo runs a celiac panel routinely for his patients).

So, the one daughter who I have brought to the doctor numerous times for stomach aches, eczema, unexplained weight gain, pain in the legs and feet, tiredness, headaches, and depression ends up testing negative on her blood work. I am going to talk to the doctor and find out if we can go ahead with a scope anyway, or whatever other tests I need to get done to know concretely that something else is causing her problems.

You're doing all you can. Hang in there, and it will work itself out. You're the parent - you know your kids better than any doctor out there.

[blossom3]

Hmmmm, I think I'd ask to have a scope done too. If not, then you could always try taking her off gluten and see if her symptoms improve. I'm really considering doing that. I keep reading about how difficult it is to interpret the blood test results too. It makes me wonder if I should try to find someone (maybe at Children's Hospital) that knows how to read these things. It really seems confusing whenever I've read about it. Isn't it so frustrating knowing something is wrong but not getting any answers??

[GFinDC]

It is not surprising at all that the antibody blood tests are negative when she has symptoms. That is common. The antibodies are mostly in the gut where they do their work, not circulating around aimlessly in the blood stream. Some people never test positive on blood tests even though they have severe celiac symptoms. Being short and having the digestive symptoms you describe is very good evidence she has a digestion problem. Did the doctor test her vitamin and mineral levels? If they are low (and they probably are) she may need supplements to get them back up to normal values. Given that you have 2 other children with celiac it seems very likely that she has it also. There is another user on the board whose entire family has celiac too, i don't remember who though.

You might be better off going to a doctor who specializes in celiac. The doctors secton of this board has recommendations for some ares. You could also check with your local chapter of R.O.C.K. and the CSA. There are celiac centers in Baltimore and Chicago and in California too.

[blossom3]

Hmmm, I'll check out the doctor's section--I'm newish to this forum and haven't stumbled upon it yet--thx. Is it really that common for the blood tests to come back negative in people with celiac? That certainly makes things more challenging LOL. Well, my gut tells me that, if we don't get some resolution from her upcoming pediatrician's appointment, we should take her off gluten and see what happens. Nothing to lose at least:) Thanks for the info--gives me things to think about and look into.