Searching For Refractory Friends

[Roda 186]

I/we have finally made a decision to what direction to go regarding further testing for my 10 year old son. Hubby and I have been trying to make a joint decision on further testing vs. gluten free trial. Oldest son has been blood tested for celiac three times and all were negative. I'm going to get a referal to a GI and see if they will scope him. Despite the results I will then trial him gluten free. Hubby wants to go thru this process since we didn't with the youngest. He even wanted to have the younger son scoped now. I explained the process to him and he finally agreed not to do it. He is sad for him that he has celiac and that it will exclude certain occupations for him, namely the military if he was to choose that. So he wants to be certain for the oldest. As of right now the oldest one is excluded because of the asthma diagnosis anyway (did do a methacholine challenge when he was 8 and did not pass it). So I am going to get the ball rolling this week on the referral. I also asked the boys (they are 4 yrs apart in age) to hold their hands up together. I was shocked that my 6 yr olds hand isn't that much smaller than the 10 yr olds. I am making sure he has plenty of gluten in him. During school he ate lunch at school and treats at home with his daddy so he was getting plenty. Now that school is out he has been eating very gluten light so now I will make it a point to feed him lots of gluten until we can get to the GI. I truely in my heart believe that he needs to be gluten free. I don't want it for him, but it is what my gut instinct is telling me.

[Roda 186]

This stinks. I have been researching three different gi groups and will probably be able to make a decision and call for an appointment on Monday. What stinks about it is that my poor kid has been miserable since Monday. He went away over Memorial weekend with some of his friends and was able to eat anything he wanted. They had pizza most of the time. He has been complaining of his stomach feeling bad or gas pains since. Of course I have also been making it a point to give him gluten when ever I can. I know it is bothering him. He doesn't even want to go out and play (big red flag) which is so out of character for him. Usually he is non stop. So I can really sympathize with anyone who is dealing with this or is going through a gluten challange. I know he wants the stomaches to stop. Hopefully we can get in fairly soon. I will also make it a point to be put on a cancellation list for the scope if the wait is long.

[love2travel 396]

So sorry to hear about your son's tummy troubles - it must be so hard for you as a parent to see him go through this.

Unfortunately for accurate biopsy results it is recommended to eat the equivalent of 4 pieces of bread a day for 3 months. That can be a long time for many.

Hang in there!

[Roda 186]

He has never been off of gluten so we do not need to do a "gluten challenge." We should be fine going straight into the biopsy. I'm just making sure he eats lots of gluten because sometimes he prefers my stuff.

[love2travel 396]

He has never been off of gluten so we do not need to do a "gluten challenge." We should be fine going straight into the biopsy. I'm just making sure he eats lots of gluten because sometimes he prefers my stuff.

I must be having an off day to have missed that!! In that case, I really hope the sooner the better. Poor little guy!

[Roda 186]

Sometimes I ramble too. I get that way when I haven't had enough sleep so sometimes what I write may be confusing. Thanks for the thoughts!

[love2travel 396]

Sometimes I ramble too. I get that way when I haven't had enough sleep so sometimes what I write may be confusing. Thanks for the thoughts!

I'm in a bit of a fibro fog today (that is my excuse and I'm sticking to it!). Really, all the best. Hopefully you will get some answers quickly!

[Roda 186]

I have him a GI appointment on July 13th. I could have gotten in on June 22nd but we will be on vacation. I wish we could've taken that appointment, but oh well.

[notme! 298]

I have him a GI appointment on July 13th. I could have gotten in on June 22nd but we will be on vacation. I wish we could've taken that appointment, but oh well.

did you go with the k-town children's hospital group? you must be further east - my in-laws live in rogersville (i was looking at that mobile farmers' market - what a great idea!) we have one right in town - no strawberries (boo) yet but i think it starts saturday (yayy!) poor little guy - i am fairly sure one of my grandkids probably has celiac (probable his dad, too - type 1 diabetic) i let little ollie eat meemo's snacks and feed him gluten-free whenever i can. his parents do not. worst dirty diapers ever

[Roda 186]

I had to cancel the appt. The group is affiliated with Children's Hospital in Knoxville. The physician would accept our insurance, but to have the scope done at Children's it was going to be too expensive with insurance only paying half. So I guess I will try to get a referral to this one in Kinsgport and have it done at Holston Valley Medical Center. I'll get on it tomorrow.

[notme! 298]

ugh. sorry to hear that but hopefully you will get a good dr. insurance is ridiculous sometimes! (ok, alot) i know ours is

[Roda 186]

I'm getting a referral to another GI doc that is in network with my insurance. Hopefully she will be worth a hoot. I picked up the records I requested from the peds office today. Wow am I learning a few things. At his 15 month check up his doctor (original one who delivered him) was concerned about his growth. He had went from the 50th percentile to the 15th. I must have not noticed or forgot about that. Shortly after that we moved to PA and no one there ever commented on it. In PA is where we really started doctoring for his severe constipation issues and was put on miralax. My MIL mentioned something she saw on TV that maybe my son could have it and she mentioned celiac. Knowing my MIL, we disregarded what she saw, since she is always mentioning things she see's on TV. I also looked at some labs from during that time..on two occasions his hemaglobin and hematocrit were low. I was never told and went along thinking everthing was fine except the constipation. He had a gastrografin enema (same as barium enema just different contrast) at 2.5 yrs old. It helped clean him out and then started the miralax. Symptoms continued and after we moved to TN we followed up. Continued the miralax until he was around 3.5 yrs old or so. We limited dairy and made sure he had lots of fiber and things seemed to improve. So is it possible to have symptoms then to have them seem to go away for awhile? I wish I knew then what I know now, but hindsite is 20/20 and this was long before I knew of celiac. I'm hoping with all his medical history, his allergist's recommendation of gluten free and my diagnosis will be enough for this doctor to scope him. Even if it turns out negative I will be doing a trial of gluten free. I'm going to call after we get back from vacation and get a bone age x-ray done for him also. I asked about it two years ago, but we never did do it thinking he would catch up.

[Roda 186]

Only a few more days until our GI consult. We go on Thursday. He has had his ups and downs and I hate keeping him eating gluten when I know in my heart it is causing him grief. He still is complaining off and on that he does not feel good, that it is his stomach that hurts. He came out of bed tonight whinning, almost on the verge of tears saying he didn't feel good. Breaks my heart. So I hope we get somewhere with this gi doctor and don't get the run around. If we do I will still do a trial of gluten free anyway. He has decided that he is tired of not feeling well and wants to try it. It's nice that he is on board too. I feel since he is 10.5 yrs old that I need to seriously take into consideration how he feels about it. Keep your fingers crossed for us...

[mommida 161]

My fingers are crossed, but I will say some prayers too!

Almost there! If your son is young enoughthe hospital will dote on him. If he is older get him something special for going through all this.

[beachbirdie 43]

Only a few more days until our GI consult. We go on Thursday. HKeep your fingers crossed for us...

Fingers crossed! Good luck tomorrow.

beachbirdie

[Roda 186]

Thanks everyone. The doctor's office called today to inform me that the doctor had a meeting to go to after our appointment. The secretary told me they had the patient before us cancel and asked if we could come then. If not, she felt it would still give the doctor enough time. Well, given that I waited almost 2 months to get an appointment I took the earlier appt. I didn't wait that long to be rushed in our appt just so the doc could make her meeting on time, NO WAY! Yeah, if she will agree to scope him he will definately deserve something special. Any advice in dealing with his appointment?

[Roda 186]

Well we went to the appointment last week. The doctor seemed pretty smart and took our time with us and he is going on Aug. 17th for his scope. Mind you I was sleep deprived at the appointment so what seemed to make sense then, may not now. Here is the gist of what she had to say: thought that something should show after being tested three times on bloodwork if he was celiac but did acknowledge that there can be false negatives etc, wanted to know if we have tried eliminating dairy, wanted to give him something to make him more regular but I said no to meds I wanted a natural approach such as comsuming more fiber and she was alright with that, repeated his blood work and she said she would order the DGP which he has never had, wanted to know how I was diagnosed and his brother (told her brother had positive blood work and declined scope and good response on diet and had a bad reaction on gluten challenge. It seemed to me that she would give a diagnosis if I wanted on him if I took little brother). I told her my intentions of going gluten free regardless of the scope results as I feel strongly that he needs to be gluten free and we have nothing to loose. I forgot to ask how many biopsy samples she was going to take so I asked the nurse after the doc left. She told me five: one in the esophagus, two in the stomach and two in the small bowel. I spoke up and said that she needed to take a minimum of 6-8, and that I heard somewhere that some new recommendations are even recommending more and I wasn't going to put him through that for only two measly samples. She said she would pass it along. The morning of the scope I will not let him go back until I personally speak with the doc and convey that information for myself. This whole scope thing for me is a formality anyway. We are doing it because my husband wanted to exhaust all testing. Regardless I still want it done properly. My son has been complaining of belly/gas pains quite a bit so the sooner we can get it done the better. I would really like to hear some experiences from anyone here that has had negative blood work and positive biopsy. How common is that?

Today doctors office called me to tell me all his blood work was normal. I asked her what they ordered. She only ordered a total IgA and the ttg. I told the nurse that the doctor said she was going to order the DGP but I guess she didn't.(Doc told me that the DGP is not as sensitive as the ttg. I thought it was the other way around??) I said this is the second time I have requested that test and I still can't seem to get anyone to order it. I told her it didn't matter anyway at this point because of our plans. I am worried if the doc says she will take the number of samples I request before he goes in, that actually she won't. The blood work may have been just an oversite but I've become a lot more skeptical of things in the past 5.5 years.

[domesticactivist 109]

Good luck! My son is the same age and we figured all this out last winter. I really wish we had proper test results, but even just a tiny amount of gluten makes him feel so awful for days that I just can't see doing the testing now.

I hope you get meaningful results for your son soon. I agree it's really important to take into account how your son feels about it all. The great thing is that at this age many kids really are able to understand and make good choices with a bit of guidance, and the memory of feeling sick will help him stay on track after he feels better.

As bad as I feel for how bad my son has felt, I am thankful that we figured out what was wrong and that he actually remembers feeling awful. That memory of feeling really sick keeps my son on track with his diet now. A couple weeks ago he was at a camp and they took all the kids to a fast food place for milkshakes without telling us ahead of time. He understood the risks and refused to have anything there despite the pressure from staff and other kids. Two days ago at another class a kid offered him something from his lunch. When he explained why not, the other kids realized he couldn't have anything from the vending machine and were all sorry for him. At first this stuff really bothered him. He still doesn't like feeling different and having to explain all the time. But this is great practice, and a good life skill. When he encounters other kinds of peer pressure he'll have great practice with thinking for himself and making good choices. So there is a silver lining.

[Bubba's Mom 103]

I am one who had a normal blood test, but the specialist did the scope anyways because I was losing weight and too nauseated to eat. The scope showed a lot of damage and she was positive the biopsies would come back as Celiac Sprue. She took 5 samples.

I was given pics from the scope right after, but I wondered what looked so obvious to her? I couldn't find anything online to compare it to other than super enlarged images.

I just went back two days ago to go over the results of my vitamin/mineral levels and Dexa scan. I had a list of questions for her. When I said I couldn't find pics to compare she said she could block out another patient's name and show me what a healthy duodenum looked like. I was so glad for the opportunity to compare. I definately had damage!

The Dr. came in and told me about the procedure before they took me into the surgical room. I think that's pretty standard? Please stress to your son's Dr. that you'd like more samples taken so you get an accurate idea of what's going on.

Good luck! There was a little boy about 2years old getting a scope the same time I was. They were wonderful with him. I hope you experience the same.

[Roda 186]

He went for his scope/biopsy last week. The doctor told me everything look good and would contact me in about a week on the biopsy results. I got a call today and they told me everything was normal. I did ask for them to send me all of his test results. I want to read them for myself. As many of you on here know they don't always tell you everthing. However, I had a gut instinct that the biopsy would be negative. His blood work has been consistently negative(he has been tested several times). After I get the results in hand I'm going to go back to his allergist and see what his opinion is. I already know he thinks he needs to be gluten free regardless of a celiac diagnosis. He feels the genetic predisposition is to strong for him not to be.

I sit here conflicted once again. I know I said I was going to trial him regardless, but I think it will be harder to convince my husband. At least with my youngest son he had positive blood work. I know this may sound bad, but I almost was hoping it would have showed something, even mild, to help me with my confliction over it. I have not put him gluten free yet as I told him I would wait until the results came in. I just wish the decision was easy. He is willing so I should just go with that. Funny, since his scope last week he hasn't complained of belly pains/gas pains once.

[domesticactivist 109]

I think my previous post was on the wrong thread. You did the right thing by requesting his records. You can actually request the whole chart! I had to pay a fee for copying but getting the whole chart was enlightening. Seeing the history and progression of things I brought him in for that were disregarded made me so mad!

I got my chart and my daughter's, too while I was at it. I found that useful as well.

So, I'm curious - how many samples were taken? If not the 6-8 I'd be looking for a new doctor.

[Roda 186]

I think my previous post was on the wrong thread. You did the right thing by requesting his records. You can actually request the whole chart! I had to pay a fee for copying but getting the whole chart was enlightening. Seeing the history and progression of things I brought him in for that were disregarded made me so mad!

I got my chart and my daughter's, too while I was at it. I found that useful as well.

So, I'm curious - how many samples were taken? If not the 6-8 I'd be looking for a new doctor.

I was assured by the doctor that she would do at least 6.

[pain*in*my*gut 8]

He went for his scope/biopsy last week. The doctor told me everything look good and would contact me in about a week on the biopsy results. I got a call today and they told me everything was normal. I did ask for them to send me all of his test results. I want to read them for myself. As many of you on here know they don't always tell you everthing. However, I had a gut instinct that the biopsy would be negative. His blood work has been consistently negative(he has been tested several times). After I get the results in hand I'm going to go back to his allergist and see what his opinion is. I already know he thinks he needs to be gluten free regardless of a celiac diagnosis. He feels the genetic predisposition is to strong for him not to be.

I sit here conflicted once again. I know I said I was going to trial him regardless, but I think it will be harder to convince my husband. At least with my youngest son he had positive blood work. I know this may sound bad, but I almost was hoping it would have showed something, even mild, to help me with my confliction over it. I have not put him gluten free yet as I told him I would wait until the results came in. I just wish the decision was easy. He is willing so I should just go with that. Funny, since his scope last week he hasn't complained of belly pains/gas pains once.

I am so sorry you didn't get anything conclusive!

From what I have researched about the DGP test, it is considered to be a very valuable test in children whose tTg is negative. DGP antibody apparently becomes positive before the tTG does, so it can potentially detect Celiac before damage has occured in the gut. I would really push the doctor to order this test for your son.

I was screened 3 years ago for Celiac using the older Anti-gliadin ABS and I was negative (but very symptomatic of Celiac). This time, I was screened with the DGP, and it was positive, but my tTg was still negative. So I am kinda expecting a negative biopsy, but I am still going gluten-free because of the positive DGP.

Gosh, I wish this whole disease was easier to dx. There are just so many variables....

[Roda 186]

I am so sorry you didn't get anything conclusive!

From what I have researched about the DGP test, it is considered to be a very valuable test in children whose tTg is negative. DGP antibody apparently becomes positive before the tTG does, so it can potentially detect Celiac before damage has occured in the gut. I would really push the doctor to order this test for your son.

I was screened 3 years ago for Celiac using the older Anti-gliadin ABS and I was negative (but very symptomatic of Celiac). This time, I was screened with the DGP, and it was positive, but my tTg was still negative. So I am kinda expecting a negative biopsy, but I am still going gluten-free because of the positive DGP.

Gosh, I wish this whole disease was easier to dx. There are just so many variables....

I specifically asked this doctor to order the DGP and she said she would then didn't! He also was tested last Nov. with an order for the DGP and the lab did the older version instead (yes they had both tests available)!! I'm just at my wits end over the whole thing.

[Roda 186]

DS1 went gluten free August 29th. Hubby said if I wanted to do it he would be 100% supportive!! He is going to be gluten free until Christmas break in mid December. We will do a gluten challenge then so we won't have to worry about school. Since he does not have a diagnosis or doctor's statement to back up the dietary changes, I didn't bother talking with the school. He is a pretty smart kid and knows most of the ropes from having to deal with it with his brother and me. He even turned down cupcakes that someone brought in to school. His teacher asked why and he told her that he was trying a new diet.

I don't know if I'm imagining this or not, but I think that he might have been suffering gluten withdrawl last week. He was moody as all get out and he was having trouble sleeping. He was being really hateful and nasty to his brother (mind you they have their moments regardless) worse than usual and just saying the nastiest things. I even think he is starting to be more "regular". He also hasn't complained of a stomach ache since last Sunday. I wonder this because for the first week that DS2 went gluten free he was more moody also. By the second week it started to get better.