Newly Diagnosed

[melblondin]

Hi all -

I was diagnosed yesterday as celiac based on symptoms and genetic testing (positive for DQ2.5 heterozygous). I had already been eating wheat free and mostly gluten free for the past 2 months as a result of a wheat allergy, but am becoming aware of all of the hidden sources of gluten that I now need to be aware of. Yikes!! This is going to be a learning curve.

My question though is what next steps I should take for my kids? 3 of the 4 show symptoms of celiac disease although the 2 that were tested through bloodwork came back negative. Should I get genetic testing done for them to see which ones are vulnerable or should we just cut out gluten altogether? Is it correct to assume that if their bloodwork came back neg. that a scope would be a waste of time as that would be neg. as well?? I just feel like at least 2 of them have it for sure and maybe it's just in the early stages at this point. However, I don't want to restrict their diets without reason to do so. Has anyone else been in this situation? What steps did you take?

Thanks for all of the help and support. This forum is SO helpful!

[sb2178]

Don't know their ages, but blood tests are notoriously unreliable for young kids (I think it was up until age 5 or so...). The other issues is if you don't eat wheat and keep them on a similar diet, they may not be eating enough gluten for the either of tests to come back positive. Does your insurance cover the genetics? Will their docs diagnose based on an improvement based on diet?

The diagnosis is probably useful at times-- dealing with colleges, schools, relatives, etc-- if you have the time and money. I'd definitely eliminate gluten at home (for your own safety, too), but the harder question is what to do outside the house. I don't have kids, so it's not an issue. See parenting forum?

Hi all -

I was diagnosed yesterday as celiac based on symptoms and genetic testing (positive for DQ2.5 heterozygous). I had already been eating wheat free and mostly gluten free for the past 2 months as a result of a wheat allergy, but am becoming aware of all of the hidden sources of gluten that I now need to be aware of. Yikes!! This is going to be a learning curve.

My question though is what next steps I should take for my kids? 3 of the 4 show symptoms of celiac disease although the 2 that were tested through bloodwork came back negative. Should I get genetic testing done for them to see which ones are vulnerable or should we just cut out gluten altogether? Is it correct to assume that if their bloodwork came back neg. that a scope would be a waste of time as that would be neg. as well?? I just feel like at least 2 of them have it for sure and maybe it's just in the early stages at this point. However, I don't want to restrict their diets without reason to do so. Has anyone else been in this situation? What steps did you take?

Thanks for all of the help and support. This forum is SO helpful!

[T.H.]

This is what we did, for what it's worth!

I was diagnosed last August, and had the kids tested with the bloodwork - one came back positive, one came back negative. My brother and father came back positive, as well.

Here's some things that I've read (I can't confirm all these, however. They seem reliable, but I haven't researched fully on some 'facts') that have influenced what we decided to do:

-- the genetic tests look at some of the genes for celiac disease, but not all (something like there are 4-8 genes that celiac disease can show up on? And they usually test 2-4? My memory on numbers for this vague). So it's possible to have a gene for celiac disease and come back negative.

-- biopsy tests can come back positive for people with negative blood tests. However, just like was mentioned with blood tests, the biopsy results have a higher false negative rate for children. My GI doc said that this is because in children, the damage to the intestine can show up just in patches, as opposed to damage over the entire intestine, so it's possible to get an undamaged part of the intestine biopsied, even though there might be a lot of damage a few inches away.

-- the only way to make sure kids with the gene don't get celiac disease triggered is to keep them away from gluten, I understand.

-- the genes that go along with celiac disease tend to make food allergies and sensitivities more likely, even if your kids AREN'T celiac positive.

So, with that information, our family decided to take both kids off of gluten. I'm really happy we did. Our child who came back negative has had a lot of improvement in things we didn't even realize were wrong, once he went off gluten.

Both children ALSO ended up having problems with other foods, once we started paying attention. Oddly, a couple of them seem to be intolerances that affect their mood the next day. Don't show up as allergies, but it's like my kids are going crazy the next day if they have the bad foods, so that's enough for us to avoid it!

As for thinking of whether to test further, here's a couple last thoughts:

If you have kids who want to go into the military, they will likely need to have some kind of doctor's orders to get them gluten free food, so that might involve testing later, or a doctor who is willing to sign off for them, based on a food journal that you keep when on vs. off of gluten.

Some college dorms require something similar, if they will offer gluten free foods.

There might be other issues of this nature later, so testing might be something worth considering now, if you can afford it.

good luck!

Hi all -

I was diagnosed yesterday as celiac based on symptoms and genetic testing (positive for DQ2.5 heterozygous). I had already been eating wheat free and mostly gluten free for the past 2 months as a result of a wheat allergy, but am becoming aware of all of the hidden sources of gluten that I now need to be aware of. Yikes!! This is going to be a learning curve.

My question though is what next steps I should take for my kids? 3 of the 4 show symptoms of celiac disease although the 2 that were tested through bloodwork came back negative. Should I get genetic testing done for them to see which ones are vulnerable or should we just cut out gluten altogether? Is it correct to assume that if their bloodwork came back neg. that a scope would be a waste of time as that would be neg. as well?? I just feel like at least 2 of them have it for sure and maybe it's just in the early stages at this point. However, I don't want to restrict their diets without reason to do so. Has anyone else been in this situation? What steps did you take?

Thanks for all of the help and support. This forum is SO helpful!

[melblondin]

Don't know their ages, but blood tests are notoriously unreliable for young kids (I think it was up until age 5 or so...). The other issues is if you don't eat wheat and keep them on a similar diet, they may not be eating enough gluten for the either of tests to come back positive. Does your insurance cover the genetics? Will their docs diagnose based on an improvement based on diet?

The diagnosis is probably useful at times-- dealing with colleges, schools, relatives, etc-- if you have the time and money. I'd definitely eliminate gluten at home (for your own safety, too), but the harder question is what to do outside the house. I don't have kids, so it's not an issue. See parenting forum?

Sb2178 - Thank you for your response. Their ages are 5,3 and and 10 months. Yes, the reason I question the negative bloodwork is that the year prior to this most recent test, the now 3 year old was 1 or 2 points away from testing pos., so it doesn't really seem consistent. At this point they do still eat a decent amount of gluten, but we will soon be making our home much more gluten-free as a result of my results and symptoms. Unfortunately our insurance doesn't cover genetic testing, so we will test each of the kids as we are able to afford it if we feel it is necessary. I do think our doc. would diagnose based on improvement, but I will ask that when we go see him next month to discuss everything. Yes - a big decision is what do we do outside of the home, but maybe their dietary response will determine that for us.... so much to decide... thank you for your input regarding long term issues like college, etc.!!!

[melblondin]

T.H. -

Thank very much for sharing your thoughts and experience with me!! I am leaning toward just going gluten free and watching to see if their main symptoms improve. It's really hard as a mom to continue feeding them food that I suspect is "poisoning" them just for the sake of a test that is largely unreliable anyway! However I do see some positives in being officially diagnosed as well. One of my thoughts is that they could always do a gluten challenge when they're older if they need an official diagnosis, right? I think my husband leans toward an official diagnosis, but is open to just trying the diet, so I will share your thoughts with him as well. IMO, the sooner I can get them well the better. On a side note, my 10 month old weighs 17.8 pounds and we just found out that one of my friend's 3 month old weighs 15 lbs., so we think something has to be going on. However, I haven't given him gluten containing foods for about 4-6 weeks now, so I expected him to start gaining. Do you know if that is an unrealistic expectation?

Also, with the genetics testing - do you know if when they say that 25-30% of people carry the genes for celiac, is that percentage including all of the gluten related genes or does 25 -30% of the population carry the DQ2.5 gene specifically? Just wondering if carrying the DQ2.5 makes my symptoms more likely to be coming from celiac disease as opposed to gluten sensitivity...

[T.H.]

I kind of had the same thought on the gluten, that my son could do a gluten challenge when he's older, if he wishes. It's a terrible feeling to think we're hurting them just with food, yes?

I'm not sure how long it takes for a child to start gaining, honestly. I know my GI said that the healing can be slowed by dairy, because most unhealed celiacs are lactose intolerant until they heal. Or if there are any other gut issues, that can slow healing too.

Otherwise, I found an article on this site re: children and celiac and...growth hormone? I believe it was saying that they are finding a correlation between celiac disease and some kind of effect on the pituitary gland, that makes it inhibit growth? I know that the effect seems to go away once gluten is gone, but it takes a while, so googling celiac children and pituitary gland might find the research to help figure out how long that takes, maybe?

I'm afraid I don't know which gene the statistic refers to, sadly. I'm wishing I did!

T.H. -

Thank very much for sharing your thoughts and experience with me!! I am leaning toward just going gluten free and watching to see if their main symptoms improve. It's really hard as a mom to continue feeding them food that I suspect is "poisoning" them just for the sake of a test that is largely unreliable anyway! However I do see some positives in being officially diagnosed as well. One of my thoughts is that they could always do a gluten challenge when they're older if they need an official diagnosis, right? I think my husband leans toward an official diagnosis, but is open to just trying the diet, so I will share your thoughts with him as well. IMO, the sooner I can get them well the better. On a side note, my 10 month old weighs 17.8 pounds and we just found out that one of my friend's 3 month old weighs 15 lbs., so we think something has to be going on. However, I haven't given him gluten containing foods for about 4-6 weeks now, so I expected him to start gaining. Do you know if that is an unrealistic expectation?

Also, with the genetics testing - do you know if when they say that 25-30% of people carry the genes for celiac, is that percentage including all of the gluten related genes or does 25 -30% of the population carry the DQ2.5 gene specifically? Just wondering if carrying the DQ2.5 makes my symptoms more likely to be coming from celiac disease as opposed to gluten sensitivity...

[chocolatequeen]

I hope this helps. I'm 25 and my blood work was negative as well, but my biopsy was positive. I would not rely solely on the blood work. Blood work is never 100% accurate. Also, an endoscopy is a very painless procedure and insurance may cover it versus genetic testing.

[melblondin]

I hope this helps. I'm 25 and my blood work was negative as well, but my biopsy was positive. I would not rely solely on the blood work. Blood work is never 100% accurate. Also, an endoscopy is a very painless procedure and insurance may cover it versus genetic testing.

You're right that our insurance will cover it over genetic testing. Just out of curiosity, did your doctor recommend the biopsy based on symptoms since the bloodwork was negative or is that something you had to push for? Did you have the genetics done as well or no? Thanks for your input. It does seem like there are a lot of people out there with negative bloodwork and yet positive biopsies. Interesting...

[chocolatequeen]

You're right that our insurance will cover it over genetic testing. Just out of curiosity, did your doctor recommend the biopsy based on symptoms since the bloodwork was negative or is that something you had to push for? Did you have the genetics done as well or no? Thanks for your input. It does seem like there are a lot of people out there with negative bloodwork and yet positive biopsies. Interesting...

Yes, my doctor did recommend the biopsy, BUT not necessarily to look specifically for Celiac. Once my Celiac blood work was negative my doctor totally dismissed the idea of Celiac Disease. I was having various symptoms, many including GI and we were trying to pinpoint the cause. But I will tell you that while receiving testing of nearly every kind trying to figure out why I was sick I learned that you CANNOT rely on most doctors to take all the necessary steps to find a cause for your issues. I think many doctors, including mine like to throw random guesses out when they don't know what to do or don't care enough. They give up on patients too easily I think. I also think that many doctors are so uninformed about Celiac. My endoscopy was the very last test I had done and since prior to my endoscopy they hadn't found any reason for my symptoms they were trying to tell me I had IBS, I was nervous, eat more fiber, etc. So, YES I had to be very persistent with my doctor and kept going back by my own request trying to find a diagnosis. I have not had the genetic testing, but plan to do so when we decide to have children!! I have not looked into how expensive the genetic testing is, but just kind of assumed it was very pricey.