Very Very Concerned Parent (long)

[nogluten77]

Hello there, looking for some suggestions or opinions about my son who is 7 years old with celiac disease. A little background information...My son was diagnosed almost 2 years ago with celiac disease. He had many of the very familiar symptoms, and the diganosis was realitively quick (compared to some people) We went to a Children's Hospital to have the biopsy done, and by son was being seen by a pediatric gastroenterologist there. We noticed a very quick change once we implemented the gluten free diet, and we were so happy to finally have our little boy looking and acting healthy. Around Nov/Dec of 2005 Brandon started showing symptoms again. We analyzed his diet, watched everything he ate, talked with teachers, etc. Fianlly we took him back to the gastroenterologist because we weren't too sure if we were dealing with celiac or something else.

Sadly our experience at Children's Hospital was not a good one. Basically what ended up happening was a "good luck" from the doctor and a confirmation that his celiac blood work was still elevated after 9 months of being gluten free. Eventually Brandon started to feel better, and seemed to recover from whatever was happeneing.

Well here we are a year later and Brandon has been quite ill again. We took him to his primary care doctor (who isn't real familiar with celiac disease). He has been experiencing severe bone pain, stomachaches (with and without diarrhea) and headaches, and severe fatigue at times. His primary doctor drew blood, and we found out that some of the specific white blood cells are elevated and others are lower then normal. His hematocrit is low, and his total protein is low. I asked the primary doctor if she thought this could be celiac related, and she basically said she didn't know.

So....now here are my questions 1. Is there a specific follow up for celiac disease? Yearly blood work, more biopsies, etc? 2. Can bone pain be celiac related? 3. Complications of celiac?

I'm so worried and frustrated, looking for any suggestions, opinions, etc.

I would like Brandon to be seen by a pediatric gastroenterologist again, but the wait at Children's Hospital is until mid March. A different one at a different practice is the end of March.

Ekkkksss....I'm going crazy worrying.

[key]

Yes, celiac disease can cause bone pain for sure. My suggestion would be to have a follow-up endoscopy and see how he has healed. Also he should have his celiac panel redrawn to see of he could be getting gluten in his diet somehow. He could be getting it somewhere maybe. Is your house gluten free? Do you call every company before he eats a food? What is his diet like? Can you share some of the brands he is eating or any new food you have introduced? I don't know about the WBC's and protein levels. Also I suppose he could have more going on, plus the celiac disease. Also there are some people with celiac disease that seem to develop new food intolerances, such as soy, dairy or corn. I read in an article, that up to 25% of food companies, don't have good policies to prevent cross contamination in plants. There are alot of us that seem to get gluten from foods that "claim" to be gluten free. Also, does he eat out ever? THis is also a risk. He should also not be sharing a toaster, mayo jars, etc. with the rest of the family.

I hope you find some answers soon. Take care and I do understand the worry over a sick child. We have been there many times.

Monica

[nogluten77]

Thank you for your response! It is SO appreciated! Our house is a gluten free house. I've been gluten free for 3 1/2 years, and I also have a daughter that is gluten free. We are so aware of cross contamination issues....no one in the house eats gluten (my husband and other daughter who are not gluten free). We investigate every brand...we try to stick with natuarally gluten free foods (fruits, vegetables, meats) We use ener-g brand, and kinnicknick (spelling is way off I think!) We belong to a gluten free support group and have recieved so much good information from them.

I think my frustration lies in the lack of information given to us. I am an RN...so I don't know if the pediatric gastroenterologist assumes that I should know everything, but when asked about follow-up, he said just follow the diet and good luck~ I was shocked at his response. I've tried looking up information regarding follow up care and celiac, but get no real clear cut answers. I've read where a second endoscopy and biopsy should be performed after the gluten free diet has been implemented, but don't know how long after or anything like that. I was shocked that this gastroenterologist is located at a well known Children's Hospital, but I left feeling very lost and overwhelmed.

I feel that we do really good with diet, but don't know if there is something happening at school, or if I should be worried about possible complications (refactory sprue, etc)

Once again thanks for the response..it's greatly appreciated.

[celiacgirls]

It is possibly coming from school. I know my daughter is compliant on the diet but I was shocked to see her friends putting their hands in her cookies while they were eating pizza! The next time I went, I saw them sharing potato chips with her. The potato chips were fine but the hamburger bun they were eating at the same time was not. The teacher has made them all aware (including my daughter who doesn't believe this) that this is not good for her. I discovered this by accident but it makes me wonder what else could be going on there that I am not even thinking about.

I think, from reading here, that they typically just do the tTg and/or antibody test annually to check for compliance.

It could also be other intolerances. My daughter acts glutened when she has milk or soy.

[ryebaby0]

You'll forgive us all for asking --- but we've seen lots of people on the board who are "sure" they have no gluten in their diet, and it turns out they do. But in the way of eliminating any doubt, can you return to a very narrow diet and see if that helps? Another thought I had was a vitamin deficiency? Has he had a screen of basic minerals, etc ? Or a allergy test of any kind to see about other foods?

And one last thought. What are the chances your son is eating something without your knowledge, that contains gluten? You know him -- is that a tempting thing, or out of character?

When you see the GI, bring a specific list of questions. "These are his symptoms, what could be causing them... if you don't know, how do we find out? " Another endoscopy is really not as popular as it once was; a yearly tTg is probably sufficient in the absence of symptoms (which obviously you don't have!) It is really frustrating to find out how little some GIs know. After our initial dx, we were handed a stack of pamphlets and literally shown the door. Luckily our pediatrician has been doing all he can to educate himself, and we still see specialists about 200 miles away twice a year.....

Keep looking. This shouldn't be happening. A gluten-free celiac kid should be able to lead a pain-free, chocolate Danielle's kinda life!

[key]

My son also has celiac disease, besides me. He has been on the diet for a year and half and hasn't had any follow-up. HE is still small for his age, but my other kids aren't that big and he seems healthy and happy.

I too have celiac disease though and I am struggling. OUr house isn't gluten free and I cook gluten foods for my other two kids and husband. I did have the celiac panel done though and it was all back to normal. I am actually having a colonoscopy and endoscopy tomorrow and hopefully will find some answers, because I am unable to eat right now (drinking ensure), losing weight and my iron is low and I will have 8 iron infusions over 8 weeks. My doctor did mention refractory sprue, but he says it is rare. He also mentioned that there is something else going on. I am 32 and worried I may have colon cancer. I don't have blood in my stools and I don't fit the picture of Crohn's disease really. I may have an ulcer. I really do not know. I hope they figure it out though. I too am an RN.

I would call your son's Pediatric GI doctor and ask them to fit you in as soon as they can. Sometimes they can fit you in quicker if it is urgent. I would think someone definitely needs to give you an explanation of his latest blood tests.

Goodluck and I am sorry he is sick.

Monica

[celiacgirls]

deleted duplicate post

[rez]

I agree with the previous poster. Call the Peds GI and politely demand to be seen earlier. You need to resolve this and I'm sure they have an extra opening where they can squeeze you in somewhere. Hang in there and good luck!!!! You've gotten some great advice from these other posters. Try to check out vitamin deficiences or other intolerances.

[Izak's Mom]

Not sure how helpful this is, but if you can find some time to do a little online digging, I'd try to contact a European or other Ex-US doctor. Celiac disease is much better understood and recognized 'over there' and I would bet that if you emailed around, someone might be able to respond to you and provide you with some better information. The way I would go about it is to google around in different countries. For example, google.nl is for the Netherlands - they're doing major genomics research into Celiac and have identified all kinds of new markers. So I went to google.nl, typed in 'celiac' and came across Open Original Shared Link, which has a contact name. Granted, this a research guy but like I said, if you email around maybe someone can point you in the right direction & help you get some answers. Good luck!

[Fiddle-Faddle]

You've been gluten-free for 2 1/2 years longer than me, so I doubt you are making any mistakes like I did, but just in case, here are the mistakes I made for the first 2 months (til I discovered this board):

The following DO contain gluten (and I didn't realize it at first):

Corn Flakes

Rice Krispies

ALL Chex cereals

corn pops cereal

Quaker rice cakes

Most brands of soy sauce, teriyaki sauce, etc.

many brands of barbecue sauce

Many kinds of chips (for example, Pringles)

Oats (unless they are official "gluten-free" oats grown on a field that is not rotated with other crops (like wheat) and not processed in a facility that also processes wheat

deli-made tuna salad (contains bread crumbs!! )

Anything from Chinese restaurants

There are also many shampoos and skin lotions that contain wheat germ oil--this is a possible source.

Many celiacs also react to casein; some are able to tolerate it after being off it and gluten for 6 months or so; others can't ever seem to tolerate it.

You might want to pm Ursa Major (a member of this board)--she had many of these same issues as a child well into adulthood, and was only recently able to figure out many other food intolerances that she has. Since your son is so young, maybe if you eliminate all the things she is unable to eat, you might be able to work things back in, one at a time.

There is also a very long thread on this board ("OMG--Imight be on to something--when gluten-free isn't enough") where other issues possibly related to celiac are discussed, including Lyme disease and mercury poisoning.

Vaccines might also be an issue. I know, most doctors insist that they are safe. But there are some very convincing studies indicating otherwise....

Best of luck to you--please keep us all posted, okay?

[Izak's Mom]

Also - you might contact the Open Original Shared Link and ask them for a referral.

[tarnalberry]

The only followup testing I'm aware of is repeating the antibody tests, looking for very low numbers. If they're not, then it's a sign that he's geting gluten from somewhere - be it malt in a breakfast cereal, oats in the candy bar, playdoh at school, wheat germ oil in a lotion, or wheat in a dog food or whatever. After that, I hope pushing on the doctors will help you get somewhere.

[2kids4me]

I think sometimes what can happen - at least it did with my daughter - is that because someone has diagnosis of whatever (celiac, diabetes, hypothyroid) then doctors develop "tunnel vision" and attribute symptoms to the primary disease , non-compliance with diet etc.

I thiink a pediatrician needs to step back - evaluate symptoms and maybe say - okay in this celiac child, are there other conditions that could cause these symptoms and we are over looking something by narrowing the focus.

Celiac is an autoimmune condition - other intolerances, to legumes, soy, casein, lactose etc occur more commonly in celiacs, other autoimmune conditions occur as well. They need to evaluate the small intestine* as suggested by another poster, perhaps rheumatologist should evaluate bloodwork - looking at sed rates, ANA etc.

* casein allergy can cause villi flattening and elevated antibody levels too

Ask them to make sure they are not missing a "co-morbid" condition (2 diseases in same person but related eg: 2 autoimmune conditions, multiple food intolerances/allergies).

Our ped GI sees the children once a year, talks with them about the diet and does bloodwork for antibody levels.

Follow your instincts. Good Luck and I really hope they get to the bottom of it!

Sandy

[Ursa Major]

Fiddle-Faddle forgot that I changed my user name. But yes, I used to have terrible joint and muscle aches and back pain from the age of three, as well as being skinny as a stick, having no energy and being a generally unhappy child.

I finally figured out I am intolerant not only to gluten, but all lectins and even medium levels of salicylates (follow the links in my signature to find out more). The lectins (and gluten is one of them) caused the joint pains, back pain and gastrointestinal problems, and the salicylates caused the muscle pain. Nightshades contain both high levels of lectins and salicylates, and are therefore a double whammy for me. Tomatoes specifically caused migraines.

Obviously, I am now on a very restricted diet. But the awful pains are pretty much gone, no more painkillers needed (and I was on codeine 24 hours a day before starting this diet).

Mind you, the fact that his bloodwork is still elevated suggests that Brandon is still getting gluten from somewhere. Have you checked all his personal care products (shampoo, conditioner, chapstick, toothpaste, soap, lotion etc.) for hidden gluten? How about vitamins? A lot of vitamins have gluten in them. Plus vitamin E is often derived from wheat germ oil and can be a source of gluten.

And of course, the other posters are right, that school could be the problem.

I do hope you figure it out quickly, it must be very upsetting to see Brandon still suffering.

[nogluten77]

Thank you all for your wonderful suggestions and knowledge. I will be contacting the pediatric gastroenterologist today. I do wonder if Brandon is sneaking gluten, or perhaps getting is accidently. I am also going to go to lunch today at his school and see if I observe something. Hopefully with the help of the doctor and doing some investigating, we will be able to find out what exactly is going on.

THANK YOU so much to all you of, just having others who truly understand the difficulty of this disease is reassuring. I'm so glad that this disease is not terminal like some diseases, although the quality of life issues that can come along with it can be very stressful.

[Juliet]

Also have them look at your child's bone density - that could have been an issue when your son was first getting the disease and it may still be healing. Dr Pietzak (pediatric g.i. celiac specialist - www.glutenfreemd.com) recommends having a bone density test when first being diagnosed with Celiac Disease to see if it's a problem. Also, some of the problems sound similar to Pernicious (sp?) anemia - a vitamin B12 defficiency that often comes with celiac disease. And of course, as everyone else has said, other food allergies/intolerances could be coming up, too.

Also, the spring 2005 issue of "Gluten Free Living" (Open Original Shared Link) has an article on follow up care for both children & adults. I personally found it helpful.

Good luck!

[Cam's Mom]

Hi! I am reading along with a lot of interest. I posted a very similar post about a month ago. My daughter went in for her 6 month follow up (actually at 7 mos.) after diagnosis and her ttg was 73 (they said under 20 is normal). This was down from her original 181 but no where near acceptable. The knowlegable ped. gi read us the riot act about how we must not understand what gluten is. Meanwhile we have been hyper vigilant and now have tightened the reigns further to include gluten free dog and cat food and absolutely no soaps or lotions with vit. E.

Our problem is that Camryn does not show any overt signs of being glutened so it is very hard to tell if she's "gotten it". But for 20 days it seemed as though she had more energy and she actually was not constipated (for the first time in her life). Then all of a sudden the constipation is back and she gets these tiny little pimple like bumps that rupture after a few days. She says her tummy hurts a little. So, I think she's been glutened again but can't figure out the source.

Myquestion is - do other food intolerances affect the ttg or do they just produce gluten like symptoms? She eats a lot of dairy and some soy. I am so grateful to all of the wonderful and experienced people on this board!!

barb

[rez]

This is super interesting. I asked our peds GI if a lactose or casein intolerance could raise the tTG or flatten the villi. The only reason I found for a false positive tTG is automimmune liver disease, hepatitis, or Type 1 Diabetes. Maybe one of these conditions is happening as well. I would check all liver enzymes. My son's tTG was mildly elevated and we are going to have a biopsy. My question was how do they know it's the gluten. It was dairy that made him super sick. His belly would hurt, mouth sores, etc. It's not a traditional allergy. There are a couple studies on casein flattening villi, but not much. It seems as if tTG is pretty specific to Celiac. 95%. I feel that there is so much that is still unknown. I also wondered if food poisoning could flatten villi and raise tTG. That's when my son's symptoms started occuring. Again, our peds GI said "no", "it's Celiac". We are going for a second opinion. He is now back on a regular diet and doing great. He's had a few tummy aches, mouth sores, and other symptoms, but NOTHING like before, not even close. Now my head is spinning wondering if his test was false positive. This disease is so unpredictable. My advice to you both is to go to a super CELIAC expert at Chicago, Columbia, or Maryland Research CEnter. Or at least give them a call. Good luck. We go to Chicago on Wednesday.

[tarnalberry]

that's why the whole blood panel should be done together - looking at one piece of the puzzle doesn't tell you as much as looking at a number of pieces together. tTg is fairly specific, but casein can be an issue. I think, in this case, you're going to have to take one at a time. it may come down to eliminating both gluten and dairy, and dietarily testing both, individually.

[Cam's Mom]

This is super interesting. I asked our peds GI if a lactose or casein intolerance could raise the tTG or flatten the villi. The only reason I found for a false positive tTG is automimmune liver disease, hepatitis, or Type 1 Diabetes. Maybe one of these conditions is happening as well. I would check all liver enzymes.

Wow - Rez, are you saying that there is info that type 1 diabetes can raise tTG and flatten villi? Is that without the presence of Celiac Disease? Or am I misunderstanding. Can you point me in the direction of that research? My daughter has type 1 diabetes and her tTG is quite high and her marsh rating for villi was 3, so the biopsy did show damage. But she really shows almost NO symptoms of celiac except when we exam her so closely that we could almost believe that anything she does is a symptom because we're looking so hard. We just assume she is one of those somewhat asymptomatic cases, but maybe I am missing something. Anyway, for all of our obsessive work we can't seem to get that tTg down. Could it be that the diabetes is causing it to remain high, with or without celiac???

Thank you!!

Barb

[ryebaby0]

Just for reference: My son's dx tTg was 152 and it took 18 months for it to come to a "normal" reading. Your daughter just may need more time ...

[e&j0304]

What if a child's TTG is only slightly elevated? I get confused when I see some of you with TTG's in the 100's or 200's. What if the cutoff is 10 and the child has an 11? Then what would a 9 indicate...nothing??

This is all very interesting to me as I struggle to find answers for my own children and watch other people I care about struggle to find answers for their kids. Hopefully someday there will be better testing available and having to suffer through a gluten challenge to get a diagnosis won't be necessary.

[Abby's Mom]

Hi There,

I just wanted to let you know that I have a 3 year old that was just diagnosed with Celiac. I have been pushing her Pediatric Dr to test her and he kept saying "she is just going to be thin, just tall since she was preemie". Well, I decided not to take that answer any longer! I was diagnosed in July '01 which I have not been following a strict diet and which I do not have symptoms as your child or mine. I just get really bad headaches. This is definately an eye opening experience for anyone with these type of allergies. All I can tell you is that I do the same thing with the gluten free items. If you go to celiac.com and order things online, we have discovered some companies produce better items than others (i.e. 'Cause You're Special makes a wonderful biscuit and sweet corn muffin mix, the Gluten Free Pantry makes a wonderful brownie mix and Pamela's Products has a wonderful pancake & baking mix that is already mixed. How easy is that! Now it is more expensive to buy them like that, but I don't make a lot of things from scratch myself. I have purchased the Clan Thompson pocket guides on drugs (prescription and over the counter) and the restaurant/dining guide. These are very helpful as well. If you go to your favorite restaurants that are not in those guides, simply ask to talk to the manager and most of the time they are very quite helpful.

Please feel free to contact me about specific products as I have myself and my mother contacted a lot of manufacturers about certain items.

Good luck!