Doubt Its celiac disease But Want Some Reassurance

[sungold17]

Hello,

I"m the mom to a 4 year old boy. My son had a blood test to test for celiac disease and thyroid problems 2 mo age and they both came back 'within normal limits.' So I accepted that and haven't thought about celiac disease since then but after a conversation this week with some nurses I work with I went on-line to do some research. At this point I doubt my son's problems are celiac disease since the test was negative but want some reassurance.

My son was very slow to start eating solids. He could care less about them but luckily I had planned to bf for a long time and that helped. When he finally started to eat solids he was very picky and still is pretty picky. Never eats with gusto unless its junk food! As soon as he really started to eat he became very constipated. Eventually the constipation (hard, big, painful stools) went away and instead he had very pasty but dry, stinky stool. Stool that can be very hard to wipe off his anus. The smell also lingers especially on my hands despite not getting stool on them and of coarse washing them- they still smell like his poop! In the past he would get a red rash around his anus and it would itch but I always assumed it was from all the wiping we had to do to clean him up for his frequent poop accidents (stool leaking out uncontrollably around the stools he is trying to hold in). All these problems started a pattern of stool withholding on his part (it took a very long time to finally figure all of this out!) which eventually led us to the ER for the first time 2 mo ago. At that point we found out his bowels are very distented and full of a lot of gas from holding his stools in for so long (even though he no longer has hard stools.) . So we ended up at a ped GI doctor who did the blood work and set us up on the very un-fun, frustrating treatment plan for dealing with stool withholding and its effects.

I feel like all his symptoms can be explained by things that aren't celiac disease. The thing that made we research it is I feel he has never had a "normal" stool consistency in his life except when he was exclusively breastfeed. Also, his teeth are very cavity prone and has had about 10 cavities from 2 years on and they just keep coming even though I'm trying hard to to prevent them.

Any thoughts on if I should trust that the blood work was correct, gluten is not a problem, and to just work with the stool withholding OR possibily retesting for celiac disease or trying a gluten free diet (although I really don't know if I could stick to the diet unless I had a compelling reason to do so and lots of support.)

thanks,

dawn

[ShayFL]

Hi Dawn.... a lot of people in here can testify that in children under 5 or 6 it is hard to get a POS Celiac test. There are a lot of false negatives. And some go gluten-free and get EXCELLENT results in spite of the NEG bloodwork. You can still get him tested to see if it shows anything.

You can, as a parent, try a gluten-free diet. It wont hurt and can be quite healthy. If his symptoms go away, then you know he is at least gluten intolerant.

[Fiddle-Faddle]

There are lots of great kid-friendly recipes here, including pizza (you can make them on corn tortillas, or make a crust with cornstarch, potato starch, and some other ingredients, still just as fast as take out), bread (DON'T buy Food for Life brand, it tastes and feels like sawdust--make your own, it's MUCH easier than making regular bread, all you do is mix, dump in a pan, and bake), and rice-based pastas.

He doesn't even need to know you are making him gluten-free food. He'll be so happy with all the new special treats.

Just remember, though, for an accurate dietary trial, it has to be all or nothing.

I think if you see results within a couple of weeks, that will be your compelling reason. There's nothing like seeing your child suddenly get healthy to make you realize that he was actually quite sick before!

And you'll get TONS of support here! Welcome aboard

P.S. If your son has any issues with asthma or eczema, that is likely caused by gluten.

[happygirl]

trying a gluten free diet (although I really don't know if I could stick to the diet unless I had a compelling reason to do so and lots of support.)

None of us know if your child has Celiac or a gluten problem, unfortunately.

However, the 'compelling reason to do so' may be that the symptoms are resolved by removing gluten.

Considering that the symptoms are still there, you may want to consider a gluten free trial and see how your son responds.

[sugarsue]

The test results are also subject to the doctor's interpretion of them. My daughter's neurologist looks at the test results and says that nothing is wrong but her pedi looks at the test and says she's gluten intolerant (she had one positive result in the celiac panel). We went gluten free and she is doing wonderfully in so many areas. Although we are still working out what may be wrong with her stool.

Good luck to you. I would continue to consider celiac or gluten intolerance whether you do testing again as he gets older or try gluten free to see how it goes. Have you tried any other allgery testing to see if maybe some other food is causing trouble?

Susan

[Fiddle-Faddle]

The test results are also subject to the doctor's interpretion of them.

Susan

This was my experience, too. The dermatologist who ordered my tests told me everything was fine and that I did not have celiac (never mentioned a possibility of gluten intolerance).

My endocrinologist looked at a copy of the same test results, and said, "this says that you have celiac." And my only "high score" was the IgG, which was through the roof, even though I'd been gluten-free for a full month.

[sungold17]

Thanks for the replies.

I don't know if Garrett's regular doctor ever got a copy of the blood work. We will be seeming him next week and I will ask him to take a look at the blood work if he hasn't all ready.

Is gluten sensitivity an accepted medical condition or do doctors think its "fake" and only validate full blown celiac disease?

If I were to try the gluten free diet for Garrett I"m wondering how I will notice if his symptoms (mainly the stool issues) are improving since he is on a stool softener every day in an effort to get over the stool withholding. I think the reason I"m really leery of trying the diet right now is there is just so much going in our lives and just dealing with this stool withholding treatment plan is stressful enough for me (and his teeth too. Although his last fillings were done yesterday so hopefully that will calm down for the next 6 mo)

Someone asked if we ever had any allergy testing done. No, we haven't. I used to think he was sensitive to dairy but was never sure. He had things like colic (which might have been a foremilk/hindmilk imbalance due to an overabundant milk supply, in retrospect) and eczema. But he has out grown the eczema except he still has cradle cap on his head.

Who knows. I'm curious to see what his regular doctor will have to say when I see him this week.

Thanks,

Dawn

[sungold17]

BTW, if someone does have celiac disease which type of doctor usually deals with this the post? A G.I doctor? Or what type of doctor dx this illness the most?

[happygirl]

Any doctor can order the Celiac blood tests. A GI doctor performs the endoscopy/biopsies.

Re: gluten sensitivity - Dr. Fasano is a leading Celiac pediatrician and researcher (www.celiaccenter.org)

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[sungold17]

Any doctor can order the Celiac blood tests. A GI doctor performs the endoscopy/biopsies.

Re: gluten sensitivity - Dr. Fasano is a leading Celiac pediatrician and researcher (www.celiaccenter.org)

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Thanks. I see this Dr is from Maryland which is where I live.

[Rondar2001]

One of my daughters symptoms (we learned in hindsght) was the cavities. She had to have all of her back teeth capped and one pulled for an abcess - about $4,000 of dental work all before she was 5 years old. I also know of another child in our city that was diagnosed after his dentist suggested Celiac just from the condition of his teeth.

I wouldn't rule out celiac until he is older and would suggest the gluten trial. We were amazed at how many symptoms we didn't attribute to celiac cleared up when she went gluten free.

[April in KC]

My husband and I both have Celiac (unusual coincidence), and didn't find out until our kids were ages 6, 3 and 1. We initially suspected Celiac because of the combination of symptoms of various family members, including the kids. We tested all the kids. Only the oldest tested positive, but the two youngest had DRAMATIC improvement on a gluten-free diet. We did the gene test for the 3-year-old, and it came back as HLA-DQ2 (most common Celiac type). He went from having 4 stools a day with dark circles under his eyes to normal stooling pattern - it took a couple of months to get there. So I am on board with the idea that testing can be unreliable in kids under 5 years old.

Having said that, milk can be incredibly constipating to some people. You might try a month each of gluten free, dairy-free and/or both at the same time. There's no harm as long as you're feeding a balanced diet.

You can introduce milk-free by slowly adding a bit of rice or almond milk to his regular milk until he gets used to the taste. Start small and just increase the amount a bit at a time.

[April in KC]

I totally understand the "one thing at a time" feeling. Sometimes when you change too much, you can't figure out what worked. Still, if your gut is telling you there's a cause for all of it...you will eventually check it out.

My oldest son who had colic and eczema as an infant ended up having the following conditions diagnosed over the first seven years of his life:

peanut allergy (1 year)

Celiac Disease (6 years)

soy allergy (6 years)

allergy to oranges (7 years)

pork allergy (7 years)

eosinophilic gastroenteritis (7 years)

I had many gut feelings and many false reassurances by friends and docs along the way...i also talked myself into thinking kids develop differently and it would all sort itself out over time...I don't blame any of them (or myself), but only you know your child well enough to know when something just doesn't feel right.

Of course I'm not suggesting that colic and eczema are always a sign of allergy and intolerance, but it's just some food for thought (no bad pun intended)...

Hugs & hope he is feeling well soon. - April

[Fiddle-Faddle]

Great advice from april, but make sure NOT to use Rice Dream if you want to be gluten-free--Rice Dream claims to be gluten-free (even says so on the box), but they use barley enzymes in the processing. They are allowed to list it as gluten-free because it supposedly has less than 200 ppm of gluten, but it's still gluten.

[sungold17]

Thanks for all the replies. I don't have a lot of time today to post. But wanted to write in that we went to Garrett's doctor and he feels these are enough indications to try eliminating gluten to see if he is sensitive to it. Also, he didn't have a copy of the blood work from the GI doctor so we are going to try to get a hold of that to make sure everything was done right. He also started us on a new more holistic treatment plan for the stool withholding (I'm so thankful for that! I hope this plan goes better then miralax. I'm so ready to try something different!)

I'm probably going to wait a month to go gluten-free so I can deal with switching over to the new plan for the withholding problem, do my research, and in a month I'll be done working at my job- so I'll have less stress.

-Dawn