UPDATED!!! Celiac in my 5 year old boy? Xray?

[jessicamcc]

I wasn't sure how to title this post. I'll give my son's story and then any help or advice would be GREATLY appreciated!!!

My son is 5 1/2. He has had stomach issues since he started eating. He threw up so much that I went back to solely breastfeeding him for 3 more months. He did somewhat better, but his skin became red and rashy. Later diagnosed with keratosis pilaris ( a skin condition). I kept insisting he had problems with food. Blood test showed sensitivity to wheat, dairy, eggs, pecans, peanuts. I was told to rotate the foods. Overtime he kept getting worse. Skin was still bad, pale, low iron, horrible stomach pain, sometimes just so tired, dark circles under his eyes, not gaining much weight, but he was growing taller. I have a wonderfully sweet boy, and yet, sometimes he would become Mr. Hyde. Disturbingly so. I went back to the doctor's and said enoughs enough; he needs help. Sent him to an allergist. He was tested and diagnosed with peanut, pecan and soy allergies. Allergist didn't believe in food sensitivity tests and said to add everything else back in. She said his problems were with the allergies. Five days after adding gluten back, he was in so much pain he was not really eating. And he was a holy terror! Can't blame him; he was in so much pain, but it was more than that. He was out of control and couldn't help it. I took him off of all gluten. They sent us to a gastrointerologist. He said L was constipated. :confused1: Typical American diet and all that. We eat the opposit of the typical American diet!!! I spend way to much on organic food and try to make as much as I can from scratch! He did send him for blood work. I called the nurse today and asked for the results. She said his IGA was 223. I asked her what that meant and she didn't know. She was going to ask the doctor and call me back. She called back a few minutes later saying the doctor wants him to come in to the hospital for an xray.

Does anyone out there know what this could be leading to? I'm so confused. I feel like I have been fighting for my son. I just don't know what we are up against. I'm crying as I write this. I just want to help him. Have any of you had a similar experience? I think my parents think I'm crazy. But, I truly feel there is something wrong and it would beso awesome to get some help for him. Could he be celiac or gluten sensitive? To anyone who has taken the time to read this- thank you for listening!!!!

[Reya]

Keratosis pilaris is genetic. Nothing you are feeding him or aren't feeding him can cause it.

[Reya]

Also, "organic food" has NOTHING to do with how healthy it is. NOTHING. AT ALL. Making food from scratch also doesn't automatically make it better balanced. My next door neighbor makes all her food from scratch, and it's delicious but full of heavy cream and butter and low on veg.

 

Celiac disease is not an allergy. It's an autoimmune condition. It cannot be caught by allergy tests. It is not a sensitivity, either. You have to do a specific test for celiac disease.

 

Lactose intolerance is not an allergy or a sensitivity, either. It's a lactase deficiency.

 

I am a sensitivity skeptic, too, but NO ONE denies the reality of celiac disease.

[kitten18]

I don't have a lot of experience. I'm sure you'll get more help from others, someone will be able to tell you what that IGA number means.

Both of my kids are GF. I believe DD is gluten intolerant, I don't have any reason to think she is Celiac. It has made a HUGE improvement in her attitude and behavior!!! HUGE!

 

My guess with the x-ray is that they're looking for evidence of constipation.

FWIW - both of my kids have had much better/easier bowel movements since going GF.

 

:grouphug:

[jessicamcc]

Also, "organic food" has NOTHING to do with how healthy it is. NOTHING. AT ALL. Making food from scratch also doesn't automatically make it better balanced. My next door neighbor makes all her food from scratch, and it's delicious but full of heavy cream and butter and low on veg.

 

Celiac disease is not an allergy. It's an autoimmune condition. It cannot be caught by allergy tests. It is not a sensitivity, either. You have to do a specific test for celiac disease.

 

Lactose intolerance is not an allergy or a sensitivity, either. It's a lactase deficiency.

 

I am a sensitivity skeptic, too, but NO ONE denies the reality of celiac disease.

 

I do realize organic isn't enough on it's own. We eat tons of fruits and veggies. I'm a juicer and I make smoothies for my kids (fruits, veggies and plain yogurt with honey). Brown rice, not white. We have tried to eliminate most preservatives and food dyes. I make bone broth to help nourish. No soda and VERY little junk.

The point I was trying to make to the doctor was that the constipation was not caused by an improper diet.

[kitten18]

Keratosis pilaris is genetic. Nothing you are feeding him or aren't feeding him can cause it.

 

Disagree. Keratosis pilaris is aggravated by food allergies/intolerance for some people.

[kitten18]

I do realize organic isn't enough on it's own. We eat tons of fruits and veggies. I'm a juicer and I make smoothies for my kids (fruits, veggies and plain yogurt with honey). Brown rice, not white. We have tried to eliminate most preservatives and food dyes. I make bone broth to help nourish. No soda and VERY little junk.

The point I was trying to make to the doctor was that the constipation was not caused by an improper diet.

 

Do you think your DS is constipated? Sometimes it seems little kids can get constipated in spite of how good they eat and it can take awhile on Miralax or magnesium to fix that.

Is he GF right now?

[jessicamcc]

I don't have a lot of experience. I'm sure you'll get more help from others, someone will be able to tell you what that IGA number means.

Both of my kids are GF. I believe DD is gluten intolerant, I don't have any reason to think she is Celiac. It has made a HUGE improvement in her attitude and behavior!!! HUGE!

 

My guess with the x-ray is that they're looking for evidence of constipation.

FWIW - both of my kids have had much better/easier bowel movements since going GF.

 

:grouphug:

 

Thank you for your kind response! I definitely think gluten affect his behavior. Since we've taken him back off, he has been SOOO much happier! It took a few days, but what a difference! His stomache has been much happier, too! :hurray:

I just hope that they xray and results go smooth.

[jessicamcc]

Do you think your DS is constipated? Sometimes it seems little kids can get constipated in spite of how good they eat and it can take awhile on Miralax or magnesium to fix that.

Is he GF right now?

 

I'm not sure if he is. He goes very reguarly, like twice a day. Sometimes it is loose. The GI said this could be a sign of constipation. He asked us to try Miralax. My poor baby's stomache could not handle it. And he is GF now and so much happier and feeling better.

[Katy]

He's having an immune response to something.

 

The only way to confirm celiac is to first eat a lot of it for a couple of weeks to cause a bad flare up, and then to have surgery.

 

I don't see the need for this since you KNOW gluten is probably the issue. Take all sources of gluten away and see if that fixes it. If not, I know they're a pain, but I'd do an elimination diet. And I'd add back in paleo foods first, and avoid stuff like rice because even organic rice has arsenic in it. Potatoes and sweet potatoes are good starches for those with tummy trouble.

 

You can try the GAPS diet.

[Katy]

If he's going twice a day he isn't constipated. In fact his bowels could be irritated from all that fiber. Adults with those sorts of symptoms are often put on low fiber cooked vegetable (nothing raw) diets.

[jessicamcc]

Katy,

I do want to research the GAPS diet. It seems like a good place to start. I had forgotten about it! Thank you!

[speedmom4]

I really feel your pain! My ds (10) began having stomach issues when we introduced food. He had such bad diarrhea that his bottom would become so raw that it would bleed. He would have a dozen diarrhea bowel movements a day. His pediatrician wasn't too concerned but I knew something wasn't right. The ped sent us to a GI doc but he thought i was giving him too much juice. I was furious because this kid couldn't drink any juice because it caused more diarrhea. At three he started vomiting frequently at night. He actually stopped eating and I demanded that the GI doc do something. He agreed to do an upper endoscopy and a colonoscopy. His colonoscopy and biopsy were normal but he had severe inflammation in his esophagus as well as large stomach ulcers. Anither test revealed that he was also having stomach motility issues. the food was not being digested and just sitting in his stomach. He started on medication and improved. He is now 10 and just got over another bout of vomiting, weight loss, fevers, etc. The GI did another endoscope and found more ulcers. He also decided to do blood work to rule out IBD (inflammatory bowel disease). All of his blood work came back normal but now he is experiencing severe pain in his lower abdomen occasionally. I am monitoring his weight and if things get bad again I will push for further testing. People are shocked when I tell then that ds is 10 because he is so small for his age.

 

I would want to know why your GI doc doesn't want to do a colonoscopy and endoscopy with a biopsy. The biopsy would show Celiac or Crohn's disease. Crohn's disease many times had a skin component along with it. Why does the GI want an X-ray???

 

I sure hope you find some answers soon. It is so hard to watch a child suffer!!

 

Please keep us updated!

 

God Bless,

Elise in NC

[jessicamcc]

I really feel your pain! My ds (10) began having stomach issues when we introduced food. He had such bad diarrhea that his bottom would become so raw that it would bleed. He would have a dozen diarrhea bowel movements a day. His pediatrician wasn't too concerned but I knew something wasn't right. The ped sent us to a GI doc but he thought i was giving him too much juice. I was furious because this kid couldn't drink any juice because it caused more diarrhea. At three he started vomiting frequently at night. He actually stopped eating and I demanded that the GI doc do something. He agreed to do an upper endoscopy and a colonoscopy. His colonoscopy and biopsy were normal but he had severe inflammation in his esophagus as well as large stomach ulcers. Anither test revealed that he was also having stomach motility issues. the food was not being digested and just sitting in his stomach. He started on medication and improved. He is now 10 and just got over another bout of vomiting, weight loss, fevers, etc. The GI did another endoscope and found more ulcers. He also decided to do blood work to rule out IBD (inflammatory bowel disease). All of his blood work came back normal but now he is experiencing severe pain in his lower abdomen occasionally. I am monitoring his weight and if things get bad again I will push for further testing. People are shocked when I tell then that ds is 10 because he is so small for his age.

 

I would want to know why your GI doc doesn't want to do a colonoscopy and endoscopy with a biopsy. The biopsy would show Celiac or Crohn's disease. Crohn's disease many times had a skin component along with it. Why does the GI want an X-ray???

 

I sure hope you find some answers soon. It is so hard to watch a child suffer!!

 

Please keep us updated!

 

God Bless,

Elise in NC

I'm so sorry for your son!!!! It kills me to see mine suffer! He's actually very tough, so I know when he complains it really must be hurting him. I really appreciate your sharing your story with me. It makes me feel better that I amnot the only one that has gone down this road. The doctor did say he would send him for a scope. I am puzzled about the xray as well. My hubby is going to take him soon. I am sick and my hubby convinced me that they would not appreciate me sharing my germs! I agree, just would prefer to go.

[Classic Mom]

The elevated IGA could indicate celiac. He needs to be eating gluten to continue being tested for celiac (at least 2 weeks, at least the equivalent of 2 pieces of bread daily). The test for celiac at this point (since it looks like you did the right bloodwork) is an upper endoscopy. It is quick (10 - 15 minutes) and mostly painless procedure. The endoscopy is gold standard to dx celiac.

 

Good luck!

 

 

Below is the full workup of tests for celiac:

 

1. The 2 Basic Tests

 

tTG-IgA

Quantitative IgA

A positive tTG in the proper clinical circumstance strongly suggests CeliacDisease

 

2. More Detail

 

A. Serology

i. Quantitative IgA (To verify presence of IgA)

ii. tTG-IgA (Tissue Transglutaminase IgA (IgG if IgA Deficient))

iii. Anti-Endomesial Ab IgA (IgG if IgA Deficient)

iv. AGA-IgA (Anti Gliadin Ab IgA (IgG if IgA Deficient))

 

B. Genetics

i. HLA DQ2

ii. HLA DQ8

iii. Either one or both of the HLA genes are necessary but not sufficient

to make the diagnosis of Celiac Disease

 

C. Endoscopy

i. Small bowel biopsy remains the gold standard for diagnosis

D. General malabsorption tests

i. Complete Blood Count

ii. Comprehensive Metabolic Panel

iii. B12

iv. Iron

v. Vitamin D

[Crimson Wife]

There is such a thing as non-celiac gluten intolerance. My youngest has it. She had no obvious GI symptoms and tested negative twice for celiac (second time the extended panel) and wheat allergies. She was off-the-charts small but as the doctor couldn't find anything wrong and my whole family is petite, our pediatrician chalked it up to genes. When she got diagnosed with autism in December 2011 she was wearing a size 18 mos. at 2 yrs. 11 mos. My other kids were small but not that small.

 

Anyways, I decided to do a trial of the gluten- and dairy-free diet to see if it might help with the autism. Within 6 weeks, DD experienced a dramatic "catch-up" weight and height gain. She went from being <3rd percentile for both height and weight to 5th for height and 25th for weight. By April, she was wearing a size 4T. Our pediatrician says she sees this kind of "catch-up" gain frequently in gluten-intolerant kids who go GF. I'll be curious to see at her 4 year checkup what the percentiles are. She's still on the smaller side for her age, but it's a normal small like her siblings and me.

[Parrothead]

Well I googled it for you . Low serum IgA could be a sign of celiac disease. Seems normal range in adults is between 80 and 350.

 

I couldn't find a reason for ordering the X-ray. I'd go for it to positively rule out constipation. Then things will have to more in a different direction in diagnosis and treatment.

 

 

[jessicamcc]

Hubby just walked out the door with L to take him for the xray. It is good to rule out all possibilities. I appreciate all of the responses. They have given me much to think about. We are going to ask for an endoscopy next. Henleacademy is like a typing encyclopedia of knowledge! I wondered if he should have gluten before a test. He has been gluten free for a few weeks.The nurse did tell me that for his age group the highest he should be is 185 and he is 223. So, that is not too high. Can that test be affected by not having gluten for awhile?

[gracesteacher]

My daughter has been having troubles since we brought her home. She stopped having bowel movements naturally when we introduced solid foods. She has several food allergies. However she has reactions to the actual product and not necessarly what they use to do the skin test. They did a skin test on her and blood test said she was no longer allergic to eggs so they did a food challenge. Within seconds her face swelled up with the first bit. The dr said that wasnt possible since it wasnt in the numbers. We have had all kinds of test. She lives in daily pain. We have given up all glutten (even making sure lotions ect doesnt have it) oats corn and go for periods without rice (white rice is better for her than brown due to processing the fiber shell)

She eats low fruit mainly apples banana's and berries just about what ever veggie and beans. She needs six 6 for length in pants and shirts but needs 3t for waist size

She does have two caps of Miralax a day to help. We use apple cider vinegar to help with her stop acid keeping that in check. Because she is high acid we do bone broth and she has bone meal in her morning drink.

[jessicamcc]

Gracesteacher,

I am so sorry! Living in pain constantly like that.... my heart aches for your little one. I hope you can find some answers, maybe even from a response here.

[Tiramisu]

IgA is an immune factor. They include it in the celiac panel because if your levels aren't high enough, the rest of the celiac panel won't be accurate. If it's high it can mean the immune system is working on something, that something could be autoimmune, like celiac, for example, but other things, too. You didn't say if you were told what the rest of the numbers were in the celiac panel. Crohn's is another autoimmune disease that can be aggravated by different foods and can affect absorbtion and growth. Then there's EE, which I won't even try to spell. It's when a certain type of white blood cell is found in the GI tract, where it shouldn't be, and is associated with allergies.

 

About the constipation. Your never know. We had a partially impacted bowel with multiple bms a day.

 

In any case, your family has been dealing with this for a long time. I would go ahead with any tests like an endoscopy. We did one recently and it was so quick and easy. I was so thankful to finally get answers.

 

I hope your ds finds some relief soon. I'll keep him in my prayers.

[gracesteacher]

Thank you. We have seen every speciallist that we can here and sent out stuff to see other specialists. Most people would never know she is in pain. She can have four large BMs a day and still be constipated with or with out Miralax. When her belly gets so big we take her in they xray and then give her stronger stuff and endmas to get rid of the excess. They even tests her for Hirshprungs but mostly boys get that. Typically they find that when they are really young. She is six now but about 2 when tested.

[jessicamcc]

Thanks, Tiramisu, for the info. I don't know any of the other numbers, but I will ask. Hubby just called. The hospital won't accept our insurance, so he had to leave with the orders. :mad: It takes 40 minutes to drive there! They were very apologetic about it. The doctor asked us to go to that one, because he would receive the results right away. I never thought to ask if they accept our insurance. Just called the hospital only 20 min. from us and they will take him. Crazy!

[Tiramisu]

I hope things are moving along and everything goes smoothly at the next hospital for your dh and ds. Hang in there! I know this is hard right now, but I think you're moving in the direction of getting clearer answers.

[jessicamcc]

They're back now- everything went smooth! Of course, now WE have the xrays and have to get them to the doctor. The boys liked looking at them (I can consider it science, right ;). We were able to pinpoint a couple of basic things. Pretty neat, but I'm sure the doctor will understand them better than us!

[Tiramisu]

Please update when you can. :grouphug:

[danielleMD]

I am so sorry to hear you are going through this! My son has had GI problems since he was a month old. It was a VERY long journey getting him properly diagnosed. He has multiple food allergies, constipation, and chronic stomach pain. I went from doctor to doctor and had to be very assertive. It was awful. He was finally diagnosed at the age of 2 1/2 with eosinophilic esophagitis. This was confirmed via endoscopy. However, this is a rare disorder and could have easily been missed even by other GI doctors. We live in Texas and we take him to a specialist in CA. In our search for answers there were many discussions about celiac disease, reflux, etc. my best advice for you is to follow your gut instincts and continue to be assertive in getting him properly diagnosed. Do your own research, and take him to get 2nd and even 3rd opinions if you have to. Look into good GI specialists in your area, or consider taking him out of town if you have the means to do so.

 

Because your son has food allergies you might want to look into eosinophilic disorders at apfed.org

And because he has low iron and an obvious gluten intolerance, I think you might be on the right track with celiac.

 

I wish you the best of luck with your journey! Stay strong and trust in yourself!

[Mom0012]

Hubby just walked out the door with L to take him for the xray. It is good to rule out all possibilities. I appreciate all of the responses. They have given me much to think about. We are going to ask for an endoscopy next. Henleacademy is like a typing encyclopedia of knowledge! I wondered if he should have gluten before a test. He has been gluten free for a few weeks.The nurse did tell me that for his age group the highest he should be is 185 and he is 223. So, that is not too high. Can that test be affected by not having gluten for awhile?

 

The test for celiac absolutely can be affected by not having gluten for awhile. If you are going to test for celiac, you need to have gluten in the diet.

 

Lisa

[Tammy (TX)]

So sorry for your little guy! You mentioned Keratosis Pilaris, which made me think of a book I recently read. What's Eating Your Child by Kelly Dorfman. Starting on page 136, there is a story of a little boy misdiagnosed with KP when it was really essential fatty acid deficiency. He was also constipated and had mood swings. That may not be your son's case, but it's an idea to keep in mind.

 

Actually, the whole book might be helpful in your case. It's all about being a detective and figuring out your individual child's nutritional needs and sensitivities. I had years of stomach problems, rashes, and asthma greatly improve after changing my diet. My doctors said there was nothing wrong with me and my allergist laughed at me when I asked if any of my problems could be diet related. Gluten is the main culprit for me, with dairy, soy, and several other random foods bothering me. I never tested for celiac, but did test gluten sensitive with "alternative doctor" tests. That's enough for me. Even if the tests were negative, I know how much better I feel without gluten. In fact, my kids all tested negative for sensitivity OR celiac, yet a couple of them often feel sick when they eat too much gluten out of the house (we're gluten free at home for my sake.)

 

So, good luck with the doctors. I honestly hope they can pinpoint what is bothering your son and help him feel better. If not, though, please keep researching and follow your instincts. It sounds like you're on the right track.

[Staceyshoe]

An endoscopy would (hopefully) answer questions. Given all the alleriges and intolerances, ruling out eosinophilic disorders would be a good idea. If blood levels are indicative of celiac (not sure those numbers were included in your post--total IGA doesn't indicate or rule out celiac, just helps determine reliability of the test results), a scope would be needed to get an official celiac diagnosis. With everything going on, it seems like you just need answers at this point. (HUGS) I've been at that point before with mysterious GI issues in my kids too. It's rough on Mamas to know something is wrong but not know what it is. Hopefully you'll get the answers you need soon!

[Tiramisu]

I am so sorry to hear you are going through this! My son has had GI problems since he was a month old. It was a VERY long journey getting him properly diagnosed. He has multiple food allergies, constipation, and chronic stomach pain. I went from doctor to doctor and had to be very assertive. It was awful. He was finally diagnosed at the age of 2 1/2 with eosinophilic esophagitis. This was confirmed via endoscopy. However, this is a rare disorder and could have easily been missed even by other GI doctors. We live in Texas and we take him to a specialist in CA. In our search for answers there were many discussions about celiac disease, reflux, etc. my best advice for you is to follow your gut instincts and continue to be assertive in getting him properly diagnosed. Do your own research, and take him to get 2nd and even 3rd opinions if you have to. Look into good GI specialists in your area, or consider taking him out of town if you have the means to do so.

 

Because your son has food allergies you might want to look into eosinophilic disorders at apfed.org

And because he has low iron and an obvious gluten intolerance, I think you might be on the right track with celiac.

 

I wish you the best of luck with your journey! Stay strong and trust in yourself!

 

 

That's what I was thinking about EE--eosinophilic esophagatis. The eosinophilic disorders are worth looking at because they go along with allergies. This can cause difficulty eating and keeping food down.

[jessicamcc]

I am so grateful to all of you for the very helpful advice! The doctor's office is still waiting for the report from the hospital. That is why he had wanted us to go to the first hospital; he would have been able to receive the xrays asap. Not much we could do about that, since they didn't take our insurance. L's stomache is still hurting today and his skin is very broken out.

Pastel, I'm glad to know that about the gluten tests!

danielleMD- I have never looked in this direction and will do some research.

Tammy (TX)- THANK YOU for the link to that book! I already can't stop reading it!

Tiramisu- You are so very sweet- THANK YOU!

It truly means a lot to me that so many of you have taken the time to respond to my plea for help. It is nice to have others confirm that you are on the right track and to tell me to trust my instincts! I have felt for a long time that what we are feeding him could be hurting him. I've tried to make as many adjustments where I can, but honestly, how much can I do if I don't have all the answers? I've been researching as much as I can and have gotten him an appt. with an allergist that is known for exploring all options. We can't get in till March 6th (they are very popular). In the meantime I am pushing the doctors to find out as much as they can. I think I finally just snapped and that's it! I don't want him to suffer any more, especially if there is something we can do to help him! No more "let's just wait and see". Or his skin has nothing to do with anyting else. I think his poor, little body is trying to tell us something- I just need to learn how to listen! :) I think this must be a growing problem, since so many other little ones are suffering.

[jessicamcc]

Just heard back from the GI . L is SEVERELY constipated!!! Tiramisu mentioned how that might be a possibility, even though he goes twice a day. I'm just disappointed the GI isn't concerned with what is causing this. He wants him to do Miralax (6 capfuls in 32 oz. tomorrow and one cap a day from now on). I think that is great to clear him out, but I would like to prevent this from happening again. The GI is not concerned about celiac. He said the high number is better than low. When I asked for a scope, he said he couldn't because of malpractice! If he doesn't have enough blood work to confirm celiac, he can't do the scope. I put a call in to my pediatritian's office. They are going to meet with me on Tuesday to decide what the game plan should be for L. They are the ones that wanted me to have L get the scope in the first place. Apparently, they have a few patients in the office (it's a large practice) that tested negative in the bloodwork, but the scope was positive. If they feel the need to push it with the GI for a scope; they will. I have had a very good relationship with that office for 13 years. ( I did have to learn to not push aside my own worries about being polite and talk staight with them. And they are listening wonderfully!) I think the GI thinks that I'm some crazy lady hungry to get her kid tested for no reason. ;) At least my pediatritian knows I've always been really reasonable and if I'm making a stink now that there must be a reason for it!

[Supertechmom]

Constipation can most certainly be a symptom of celiac. Only roughly 10% have the typical diarrhea type of celiac

Here are some links from various sources to back that up. You really have to go to ped celiac specialsit or run the chance of a ped GI who has little knowledge.

 

http://www.celiac.org/index.php?option=com_content&view=article&id=6&Itemid=12

 

http://www.celiaccentral.org/disease-symptoms-checklist/

 

http://www.csaceliacs.info/symptoms_of_celiac_disease.jsp

 

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets2_Symptoms.pdf

 

 

Find a celiac center near you.

 

From a mom with two non positive celiac children. Yep that's their official label. :)

 

[jessicamcc]

Constipation can most certainly be a symptom of celiac. Only roughly 10% have the typical diarrhea type of celiac

Here are some links from various sources to back that up. You really have to go to ped celiac specialsit or run the chance of a ped GI who has little knowledge.

 

http://www.celiac.or...&id=6&Itemid=12

 

http://www.celiaccen...toms-checklist/

 

http://www.csaceliac...iac_disease.jsp

 

http://www.curecelia...s2_Symptoms.pdf

 

 

Find a celiac center near you.

 

From a mom with two non positive celiac children. Yep that's their official label. :)

 

 

WOW! Supertechmom, you have given me a lot to think about and research! How did you find a celiac center? I'm going to print some of this and share with my doctor. Did your children's celiac show up in the endoscopy?

[Supertechmom]

 

WOW! Supertechmom, you have given me a lot to think about and research! How did you find a celiac center? I'm going to print some of this and share with my doctor. Did your children's celiac show up in the endoscopy?

 

 

I believe one of those sites list them. If not you can post on the forums at celiac.com and ask. I found out by just calling all the major medical places around and asking for their Gi specialty and what they did the most. When I did this, Duke was IBS, MUSC was celiac, MEdical college of Ga was generic, Mayo clinics covered it all, just depends on where you are. That info may have changed in the last few years though. I'm sure google will tell.

 

My kid did not show up on endoscopy mostly though because the Gi was an idiot who tired very hard to act like he knew about Celiac. IN reality, he had the 15 minute blurb from lecture and the paragraph from the medical text from school 15 years ago. He refused to take multiple samples (18 months of age recommendation is 20 samples, he took 6) and then refused to send it to Promethus(sp?) labs in California who specialize in celiac testing. He used the in house pathologist and of course declared her negative. Despite telling me she had some villi damage but that was just due to a milk allergy. ????

 

I did a phone consult with the ped center in Chicago and just based on her pictures, record and response to the diet, the dr and the pathologist there declared her a Celiac. said it was a no brainer. Her pictures looked that bad. The other child had high enough blood work to qualify and his response to the diet was even more dramatic than her turn around. He was the constipated child.

 

So the ped who by this time knew me very well, witnessed the 12 month ordeal from start to finish said she had lost confidence with that gi specialist and declared the both of them pre Celiac. then after a year on the diet labeled them false negative Celiac. Now after 4 years and their continued improvement in growth, catch up in a variety of deficiencies despite being on "such a limited diet" has again changed them to the new non positive Celiac. :) Gotta love it!

 

It is an evolving field, sometimes even monthly changes going into effect, and your dr has to be up on it Even info from a couple of years ago has been revised. I would start with the University of Chicago as they are the most active ongoing ped celiac research in the country and talk to them. They are very helpful.

[jessicamcc]

Supertechmom- You've had quite a journey! I agree with results; you can't argue with them! It is such a day and night difference in L being off gluten. I will contact someone to get more help. Your above links are so helpful. One mentioned on there that you HAVE to have gluten for awhile before the test. That would have been helpful to know!!!!! I just want to make sure if he is gluten sensitive or if he is celiac. Autoimmune diseases run in my family and I want to know what we are dealing with for him

[jessicamcc]

And, to be honest, I'm not sure how much his GI believes in celiac. He seems kind of old school.

[Crimson Wife]

And, to be honest, I'm not sure how much his GI believes in celiac. He seems kind of old school.

 

FWIW, my mom has a friend who was diagnosed with celiac way back in the '50's. So it's not a new condition, even if its prevalence wasn't as widely recognized until the past decade or so.

[jessicamcc]

 

FWIW, my mom has a friend who was diagnosed with celiac way back in the '50's. So it's not a new condition, even if its prevalence wasn't as widely recognized until the past decade or so.

 

You're right. I'm sure he knows about it and would obviously believe in the medical facts. Maybe the skepticism I'm sensing is more directed at me. I think I might be "one of those moms" in his mind. To be fair to him, I realize that we have only recently met and started dealing with him. He is probably puzzled by my insistence. But, my pediatrician has known us 13 years and knows I am not that way with every little thing. Ironically and thankfully my oldest has had no health issues and problems. There is a 7 1/2 year age gap between my two boys. For the first 7 1/2 years in that office, we mostly had routine visits. I would be like "everything is great, no questions here, see ya next year, unless he gets an ear infection or something." L's path has been VERY different.

[speedmom4]

 

You're right. I'm sure he knows about it and would obviously believe in the medical facts. Maybe the skepticism I'm sensing is more directed at me. I think I might be "one of those moms" in his mind. To be fair to him, I realize that we have only recently met and started dealing with him. He is probably puzzled by my insistence. But, my pediatrician has known us 13 years and knows I am not that way with every little thing. Ironically and thankfully my oldest has had no health issues and problems. There is a 7 1/2 year age gap between my two boys. For the first 7 1/2 years in that office, we mostly had routine visits. I would be like "everything is great, no questions here, see ya next year, unless he gets an ear infection or something." L's path has been VERY different.

 

Hmm, maybe all pediatric GI docs are flippant with mommas. Our pediatric GI acted like that with me in the beginning but I have proven to him over the past 7 years that I'm not one to "cry wolf". Now when we show up for an appointment he listens and acts. It is so much easier when they just do things my way! :tongue_smilie:

 

Good luck!

 

Elise in NC

[jessicamcc]

Thanks, Elise, it makes me glad to hear I'm not the only one!

L drank all of his Miralax earlier today. SIX capfuls! He's only had one bm earlier today, a normal one. Shouldn't more be happening?

Are we going to be experiencing a problem here soon? :bored:

[kitten18]

Thanks, Elise, it makes me glad to hear I'm not the only one!

L drank all of his Miralax earlier today. SIX capfuls! He's only had one bm earlier today, a normal one. Shouldn't more be happening?

Are we going to be experiencing a problem here soon? :bored:

 

Wondering how your little guy is doing after that super dose of Miralax?

[Ellie]

:grouphug: :grouphug: :grouphug:

 

Dairy can also cause constipation. Many people who are gluten-intolerant (and you can be gluten intolerant without acually having celiac) are also lactose intolerant. Sometimes it's just the lactose intolerance which causes those symptoms, as well. I'd eliminate all dairy from his diet for at least a month.

[Crimson Wife]

:grouphug: :grouphug: :grouphug:

 

Dairy can also cause constipation. Many people who are gluten-intolerant (and you can be gluten intolerant without acually having celiac) are also lactose intolerant. Sometimes it's just the lactose intolerance which causes those symptoms, as well. I'd eliminate all dairy from his diet for at least a month.

 

The problem with dairy may actually be the casein protein rather than the lactose sugar. Casein has a very similar chemical structure to gluten, so many people react badly to both. Soy protein is another one with a similar chemical structure.

[jessicamcc]

Update- L is doing good. He didn't start going to the bathroom from the Miralax until this morning. I don't think that is normal at all. He must be really blocked up! Otherwise, he is happy and playing- with an occasional run to the bathroom. ;) We hope to find out more this week from his doctor about what to do next.

Ellie- He definitely seems to have a problem with dairy and as a result we very rarely let him have a little bit. Thank you!

[jessicamcc]

 

The problem with dairy may actually be the casein protein rather than the lactose sugar. Casein has a very similar chemical structure to gluten, so many people react badly to both. Soy protein is another one with a similar chemical structure.

Very interesting. He has a problem with dairy and gluten and is allergic to soy!

[Tiramisu]

Update- L is doing good. He didn't start going to the bathroom from the Miralax until this morning. I don't think that is normal at all. He must be really blocked up! Otherwise, he is happy and playing- with an occasional run to the bathroom. ;) We hope to find out more this week from his doctor about what to do next.

Ellie- He definitely seems to have a problem with dairy and as a result we very rarely let him have a little bit. Thank you!

 

We had a similar experience. What was supposed to have kicked in within two hours took a lot, lot longer but that wasn't with just the Miralax.

[jessicamcc]

Tiramisu- I wonder if they will end up giving him something stronger. I hope your daughter is feeling better!

 

P.S. Does anyone start to crave dessert when Tiramisu posts something? :smilielol5:

(Sorry if that is inappropriate considering this thread. :blushing: )

[Tiramisu]

Tiramisu- I wonder if they will end up giving him something stronger. I hope your daughter is feeling better!

 

P.S. Does anyone start to crave dessert when Tiramisu posts something? :smilielol5:

(Sorry if that is inappropriate considering this thread. :blushing: )

 

 

In a strange but sweet way, it's nice to know I induce cravings. :)

 

I actually wanted to name myself truffle but someone else took it first. Truffle sounds cuter.

 

Middle dd seems just about recovered from last week's stomach virus. And then big dd came back today from visiting relatives and brought a stomach virus home with her. I REALLY hope it's the same virus and we all have immunity to it and not something new, or we may have a rotten week ahead of us, perhaps not too different from the subject of this thread. :glare: