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Child With Bowel Issues/eczema -- Welcome All Advice!

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I have a 4-year-old (soon to be 5) who has had bowel issues and eczema since birth, and mood swings since toddlerhood. I am hoping some people who have had similar issues and have gotten a diagnosis/diagnoses can offer some suggestions/advice.

To start, this little boy has NEVER had a normal BM in his life. My son also has, what I would call mild, eczema since he was an infant. I also noticed as a baby that he spit up quite often, as well as projectile vomited (regular, never put on soy or any other special kind)formula a few times without being sick. He had diarrhea ALL the time, even when he started on solid foods. This diarrhea stool was very strong-smelling, acidic-like, and gritty, as if there was sand in it. Now, he had this extremely loose stool until about a year and a half ago. He then just went into chronic constipation. This is about the time my husband and I started reading and researching gluten intolerance. He was tested for Celiac disease through his pediatrician, which was negative. We were told to give him fiber gummies, increase his fluid intake, and put him on MiraLax. I did this, but was not okay with the MiraLax everyday as I knew there had to be a REASON this was happening. I understand completely that being constipated all the time is NOT good, but I feel as if nobody is concerned about what it could really be. This is just not normal.

I then requested a referral to a pediatric GI specialist. We went and had more testing done. Again, Celiac panel was negative. So my son was given a bathroom diary because he was basically not using the toilet for his BMs because he was always constipated. I explained to the doc that I was highly suspicious of a gluten intolerance or sensitivity. He said that my son tested negative for Celiac and there is a difference between a gluten allergy and a gluten intolerance. He then went on to tell me that if I suspected a gluten intolerance, then I should just do a gluten-free diet and see. I have no problem doing this if it will heal my son, but I am the type of person who needs a definitive diagnosis to do something like this. It is much easier said than done going gluten free. So we haven't been back since (last spring) as I just am in limbo and don't know what to do.

My son also has EXTREMELY large BMs when he finally does go, so large that they clog the toilet almost every time. They are light tan in color as well.

Just to give you a tidbit of more info, my husband has been going to the doc for YEARS for stomach issues that he has had since he was a child, but have progressed as an adult. He has the diagnosis of IBS. His mother also has IBS, as well as rheumatoid arthritis. We also have a ridiculous amount of people on both sides of our families with ADHD. I have read that these ailments/disorders could also be tied to gluten intorance/sensitivity.

I just recently asked for my son to be referred to an allergist as I have read that some people have gotten their diagnosis that way. He tested negative for everything, so we can check that off. His pre-K teacher also told me that she noticed his motor strength is very weak. He can't really do things that other children his age seem to be able to do, i.e. hold scissors and cut, things along those lines.

I'm thinking I should probably go back to the GI pediatric doc as I am not sure what else to do at this point. My gut really tells me this is his issue, as well as my husband's. But I am not an expert, specialist or doctor. I would like some insight/suggestions on this if anyone would care to comment. I've tried talking to others about it, but unless they are in a similar situation, they really don't care or don't understand what I am talking about.

I apologize for this being so long and detailed, but it's been a long 5 years and I just want my son to be healthy.

Thank You!

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It sounds like you are doing everything you can to help your son.

First, get copies of his labs and see which labs were run for celiac. Was it one test it a panel? Children are more likely to be negative in some blood tests. You need a full panel run. Also, have you requested a small intestine biopsy?

Second, get the tests before he goes gluten-free - TOMORROW if possible. Push push push. Do not settle for NO. Your son must be eating gluten when tested - and not just for a day - it is reco'd 3 moths of 4 slices of wheat bread for best results.

Third, what you describe does fit the gluten intolerance spectrum - and I would agree with your doctor to try a trial, ASAP.

Fourth, you are going to have to accept there may not be a definitive answer for your son. You may have to do what many other parents have done, and accept that a gluten-free diet helps your child regardless of what blood work says.

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I agree. There may NOT be a dx to be had but there is still something you can do about it. While I understand WANTING a dx, it isn't what you need. You need to help your child.

My DS was dx with food allergies at 18 months. A long list that we have been working through with elimination and food challenges. We are down to 8 allergies now. Yeah.

His BM's were still exactly like your DS's. The grainy, sandy type. At 2 1/2 we did some blood work and found he was lacking all Vit. D so were sent to an endocrinologist who did the Celiac blood work. It came back + and we went with the biopsy which was inconclusive. We decided with as high as his ttg was, we would go gluten-free. His levels are coming down (after a little over a year gluten-free) but we are still working on it.

His BM's didn't TOTALLY improve till we put him on an amazing pro biotic! THAT was the kicker for us. The combination of all these changes over a 2 year time frame is what it took.

So what I am saying is get all the testing, go gluten-free for a while and see what if anything improves.

Oh, also, if you haven't already, a daily food log is VERY useful! It helped us figure out two additional allergies which he did end up testing + for as well.

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Hi StephanieL,

We are also struggling with high TTG levels (i mean anti TTG IGA levels) after 7 months of strict GFD, though all symptoms have subsided. Could you please share what your child's TTG levels were at the time of diagnosis and how they progressed in the repeat tests as and when you have done. Were you able to keep him on a strict GFD or they were some issues/mistakes upto some time. As per my understanding goes, 6 months is good enough time frame to see TTG levels coming to normal.

Thanks

Nannu

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So sorry you've had to endure this with your son, I hope you get some answers soon!

Could you post the test results here along with the reference ranges? It could be celiac, but it could be a myriad of other things. I would encourage you not to go gluten free with him until you rule out celiac, he must be eating gluten to get an accurate endoscopy.

Which part of the country are you in? If you are near one of the celiac centers I would go there to be seen with him if possible.

I have been helped a lot by the University of Chicago Celiac Center, they have a number you can call for free advice, they will call you back if you leave a message. I told them my sons history, faxed them his lab results and that was reviewed by their Doctor. Though his bloods were inconclusive (first time, they are now +ve) their Doctor said he would do an endoscopy based on his symptoms alone, which were very mild and infrequent, other paed GI's I contacted were unwilling to do the scope without a +ve blood test.

Here's the link: http://www.celiacdisease.net/information-hotline

They were so good in dealing with me we gave serious consideration to making the 13hr drive there for him to be seen by Dr Guandalini, I have since found a good Dr closer we are planning to see now.

Everyone's case is different. I have no family history of celiac, but I have an aunt and a 1st cousin on the same side of the family with Rheumatoid arthritis. My son has just had a +ve celiac panel, we're awaiting an endoscopy appointment for him.

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A couple things you could try...if you think your husband could have celiac get him tested. If a family member is diagnosed it increases the chances for you son to have it and doctors may look harder into a gluten issue for your son. Testing in kids isn't always as accurate depending on what age he was tested at so maybe it's worth testing your husband? Also, see if there is a local celiac support group in your area. I've been going to meetings at my local group for awhile and some people there gave me a recommendation for an excellent doctor. Without their recommendation I would have never heard about this doctor. (I'm not diagnosed yet, but have a biopsy in 8 days and hoping for a celiac diagnosis to explain years of issues. I've been to so many doctors over the last 8-10 years and nodoby has figured it out and he read my symptoms and looked at me and said "you are in the right place" and then spent almost an hour with me going over my medical history and answering every question I had. Having a good doctor makes all the difference.) Not all GI docs are equally trained in celiac disease so finding one that has a good reputation for celiac disease may be beneficial. And as others have said get a copy of the labs run on your son and ask people here if it was a complete blood test.

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Hi StephanieL,

We are also struggling with high TTG levels (i mean anti TTG IGA levels) after 7 months of strict GFD, though all symptoms have subsided. Could you please share what your child's TTG levels were at the time of diagnosis and how they progressed in the repeat tests as and when you have done. Were you able to keep him on a strict GFD or they were some issues/mistakes upto some time. As per my understanding goes, 6 months is good enough time frame to see TTG levels coming to normal.

Thanks

Nannu

These are from memory and while I think I have it all correct, I am not 100% sure, I may be off by a few points in either direction.

Original ttg (per the endocrinologist)- 148

GI Doc ttg- 152

GI Doc #2 ttg- 146

6 months gluten-free- 48

12 months gluten-free- 38

(For all this blood work, anything greater than 13 was considered POSITIVE)

So we are STILL not "normal" yet. His diet is VERY VERY VERY specialized. He does NOT EVER get food we don't provide. At school we have a strict NOTHING that doesn't come from home rule d/t his Celiac and server life threatening allergies. So after a ton more phone calls and theories, we got some gluten test strips. There were only 2-3 things he was eating that weren't either labeled gluten-free or I hadn't called to confirm they were gluten-free. So we tested his mustard (he used it 2-4 times a week I would guess) and found out it DID contain gluten. So we obviously pulled that from his diet.

The other thing we were wondering was if there was an issue at school. We were going to test him right before he went back to school but figured he was only out for 2 1/2 months and it was a really slim possibility that was the issue and he already gets SO MANY blood draws. So we will see again in December (6 months after his last GI appt) what he's at. If his levels STILL are not down, we are considering a trip to Baltimore to see Dr. Fassano cause if this isn't it, I am at a total loss!

HTH!

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These are from memory and while I think I have it all correct, I am not 100% sure, I may be off by a few points in either direction.

Original ttg (per the endocrinologist)- 148

GI Doc ttg- 152

GI Doc #2 ttg- 146

6 months gluten-free- 48

12 months gluten-free- 38

(For all this blood work, anything greater than 13 was considered POSITIVE)

So we are STILL not "normal" yet. His diet is VERY VERY VERY specialized. He does NOT EVER get food we don't provide. At school we have a strict NOTHING that doesn't come from home rule d/t his Celiac and server life threatening allergies. So after a ton more phone calls and theories, we got some gluten test strips. There were only 2-3 things he was eating that weren't either labeled gluten-free or I hadn't called to confirm they were gluten-free. So we tested his mustard (he used it 2-4 times a week I would guess) and found out it DID contain gluten. So we obviously pulled that from his diet.

The other thing we were wondering was if there was an issue at school. We were going to test him right before he went back to school but figured he was only out for 2 1/2 months and it was a really slim possibility that was the issue and he already gets SO MANY blood draws. So we will see again in December (6 months after his last GI appt) what he's at. If his levels STILL are not down, we are considering a trip to Baltimore to see Dr. Fassano cause if this isn't it, I am at a total loss!

HTH!

Out of interest,can you tell us what kind of mustard you were using?

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Out of interest,can you tell us what kind of mustard you were using?

It was a local store brand organic called "Nature's Basket" from Giant Eagle in the MIdwest/North East part of the US. We have since switched to Organiville. I believe you have a kid with a nut allergy (as do we) so I know the cross sections of gluten free and nut free is "fun" to navigate!

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Hi StephanieL,

Thanks a lot for sharing that data. Our case is much different, we were at 297 seven months back and now we are at 291. Journey hasn't started yet. Mustard thing alarms me. Are you talking of mustard seeds those black color seeds. We also use that in most of our food preparations. And i always knew that they are naturally gluten free. I am surprised....

Thanks again

Nannu

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Mustard thing alarms me. Are you talking of mustard seeds those black color seeds. We also use that in most of our food preparations. And i always knew that they are naturally gluten free. I am surprised....

This was actually a prepared ground mustard. The reading doesn't give and amount but I would be more inclined to think it was a cross contamination issue over something actually having gluten in it. The only questionable thing would have been vinegar but that *usually* isn't a problem.

I hope you can figure things out! It is a journey for sure and it can take some time to get the right map!

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This was actually a prepared ground mustard. The reading doesn't give and amount but I would be more inclined to think it was a cross contamination issue over something actually having gluten in it. The only questionable thing would have been vinegar but that *usually* isn't a problem.

I hope you can figure things out! It is a journey for sure and it can take some time to get the right map!

Hi StephanieL,

Thanks for that clarification. We were so confused with the results the second time, that we went for a retest. Results are awaited today. My only worry was that even if there was small CC here and there, the reading should have moved a little at least. Anyways, those are struggles and tensions that we all parents go through with our little ones.

Will update after the results.

Thanks

Nannu

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I would suggest that your husband go for Celiac panel and endoscopy w/biopsy as well. If his dx currently is IBS, this could strongly suggest Celiac disease (probably most of us here were earlier mis-diagnosed with IBS prior to Celiac dx.) And if his Mother has RA, then there could well be a genetic pre-disposition to auto-immune diseases.

Auto-immune diseases quite often never get a "definitive diagnosis". Just because your son has tested negative for Celiac, doesn't mean he's not gluten intolerant. Intolerance doesn't show up on a blood test generally. But intolerance now could develop to Celiac later in life, and by then the damage is done, and possibly too late, leaving him susceptible to other auto-immune diseases as well as cancer and other not so nice things. If he does well on a gluten free diet, then that's what you should do, regardless of a "definitive" diagnosis.

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I would suggest that your husband go for Celiac panel and endoscopy w/biopsy as well. If his dx currently is IBS, this could strongly suggest Celiac disease (probably most of us here were earlier mis-diagnosed with IBS prior to Celiac dx.) And if his Mother has RA, then there could well be a genetic pre-disposition to auto-immune diseases.

Auto-immune diseases quite often never get a "definitive diagnosis". Just because your son has tested negative for Celiac, doesn't mean he's not gluten intolerant. Intolerance doesn't show up on a blood test generally. But intolerance now could develop to Celiac later in life, and by then the damage is done, and possibly too late, leaving him susceptible to other auto-immune diseases as well as cancer and other not so nice things. If he does well on a gluten free diet, then that's what you should do, regardless of a "definitive" diagnosis.

My husband and I are 99% sure this is our son's issue as well as his. I am going to the pediatrician's office tomorrow to get a copy of his labs to post, so I can start learning more about what I am dealing with and what the next steps are. I know there is more definitive testing, so I will most likely be pushing for that.

What's so frustrating is the fact that I explained about understanding that he tested neg for Celiac, but I know there is such a thing as gluten intolerance to his pediatric GI doc (who, by the way, happens to be on the board for our local Celiac support group). It's almost like it is black and white to them. Well, he tested negative. So just do what you feel is right. Oh, by the way, make sure you give him MiraLax EVERYDAY to loosen up his bowels. What!? This poor baby has never had a normal BM a day in his young life. Never. I want answers and I know they are out there. I am very stubborn when I know in my gut that I am right about something, and mother's instinct is kicking in real hard here.

I so much appreciate everyone's advice and help with this. I am learning so much from this forum; it is by far one of the best I have found yet. I will keep everyone posted when I move onto the next step, whether it be just biting the bullet and going gluten free or trying the pediatric GI once again. Wish me luck : )

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I highly suggest you read the GAPS book. I don't think a food diary or a simple elimination is going to completely figure out such chronic issues. He's so backed up that the cause and effect just isn't going to be easy to figure out. Also, even if it is just gluten that has caused the problem, it sounds like a lot of damage has been done. More than just eliminating the primary cause is in order... he needs healing!

As for testing - false negatives for celiac are common, especially in children. If your husband is still eating gluten regularly I really hope he will get a full celiac panel done as well as an endoscopy (with many samples from the correct area taken)! Also, you can have genetic testing done to assess the statistical risk of it being celiac.

I struggled with moving forward without an official diagnosis but am SO glad we did. My kid is a different person, and the healing our whole family has undergone (but hadn't realized we needed) has been amazing.

You can find more of our story as well as posts about GAPS on the blog linked from my profile if you are interested.

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"I have been helped a lot by the University of Chicago Celiac Center, they have a number you can call for free advice, they will call you back if you leave a message. I told them my sons history, faxed them his lab results and that was reviewed by their Doctor. Though his bloods were inconclusive (first time, they are now +ve) their Doctor said he would do an endoscopy based on his symptoms alone, which were very mild and infrequent, other paed GI's I contacted were unwilling to do the scope without a +ve blood test."

Did it cost anything to have one of their doctors review the test results?

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