6 Month Check Up Tomorrow

[concernedmamma]

I am so worried that his blood work won't show improvement! We have been trying SO hard (as does everyone, I would imagine!). My son (age 5.5) has still had diarrhea quite frequently- a couple of times a month, including a couple of days before his blood draw. Definitely an improvement over the pre-gluten free bathroom visits, but not the miraculous improvement I had hoped for. I feel like we are missing something, but I have no idea what it is!! I am afraid we will get there and they will give us the results and I will cry in front of him- definitely don't want to do that! BUT my hubby is staying home with our other 3 children, so I have to take him myself.

His numbers were on the low side of 'abnormal' to start with, which makes me feel like we don't have much room to wiggle..... but I don't know if the numbers work that way or not.

Just really venting I guess..........

[ljgs]

So...how did it go????

[weluvgators]

Big hugs, Mama! I hope you appointment goes well for both of you. I understand how hard it is to try and take all of this in stride, pretending it is no big deal for the sake of "normalizing" it for our children. I understand just wanting to break down and cry, but not being able to because there are kids in tow. I have asked if my children could step outside (or if the doctor and I could step outside) at our appointments if we needed to discuss things that seemed more than my children really needed to hear/think about at the time.

And it is hard to change your lifestyle overnight! You have probably had to abandon so much of the cultural history and habits that you have probably used for your entire life (I DID!) The support system that used to be there for you (family, church, school, friends . . . )well, all of that social support system is terribly limited in the ability to truly help you navigate this IMHO. It just feels awful IMO. But I don't want my kids to feel the sorrow and grief that I do over that. I want to make something different for them . . . somehow . . . still not sure how, but we take it one day at a time.

Anyway, I hope your appointment goes well, but I understand that it just doesn't sometimes. We have had lingering issues with gluten exposure in our super duper silly girl . . . and her sister and myself. We have had to tweak and refine our gluten avoidance protocols many, many times. We have learned a lot along the way and made some absolutely fascinating discoveries. It can be very complicated and our doctors all seem to agree!

Good luck!!

[concernedmamma]

Thanks for your replies and inquiry! The appointment was a complete waste of time! They didn't have his blood work back yet! They didn't seem concerned about it however, and said, if you are trying the diet, the blood work should be improving and they aren't worried about the things I was worried about. I suppose this was supposed to make me feel better, but it didn't!! WHY does he still have diarrhea so frequently? (It has gotten better, but I don't think it is near normal yet!). He doesn't have clear symptoms of a glutening, so it is hard for us to know when we have done wrong. The one time he clearly got some (took a big bite of a regular bun and hot dog) he had no cramping, or discomfort, and it wan't until the next day that he had diarrhea. He also has to pee multiple times a day (like 20-30).

So, here I wait. I called today, and the results aren't in yet.

To weluvgators-thank you SO much for everything you said. My husband and I had that same conversation about the lack of support out there. In fact, while we were talking to the dietician, she matter of factly stated " you were probably told before that McDonalds' fries were ok, but now they aren't. There are NO fast food fries you can eat". Ok- that MAY be the truth, but how about thinking about how that impacts a 5 year old!!!!!! That alone can set off MY tears. A bit of compassion would have been nice.

Oh well, I guess that is what places like this are for, right!?!?

I will update when I find out his results.

Thanks again!

[lovegrov]

Concernedmamma, you have lots of fry choices if you're in the U.S. McDonalds fries have been independently tested and shown no gluten. Wendy's fries do not have gluten in them but a small number of Wendy's do not have dedicated fryers so you must ask. Chik-fil-a waffle fries are gluten-free and the fryers are dedicated. If you have them in your area, In and Out and Five Guys fries are gluten-free. Burger King fries are gluten-free but you must ask if the fryer is dedicated. Hardees and Dairy Queen do NOT have separate fryers. CC is a risk at any of these places.

As for the diarrhea, I know it's hard not to worry, but what do you think IS a normal number of diarrheas? Everybody gets it sometimes. My wife used to get it almost every time she ate out, and she doesn't have celiac.

[concernedmamma]

weluvgators- would you be able to explain what you mean by tweaking and refining your gluten avoidance? I feel like we have the 'basics' down, and that is as far as the "help" goes from the GI Dr and dietician. I really do feel like we are missing something. For example, here is what Jacob had today... Breakfast: yogurt, Glutino toast with his own peanut butter (not shared with gluten eaters), Snack: Watermelon, Lunch- quesadilla on Grimms gluten free corn tortillas, with cheese and gluten-free luncheon meat, Snack: gluten-free granola bar, Supper: gluten-free pizza. Oh- he also had a few of the Sweedish Berries made by Maynards. The ingredient list looks good, but haven't checked specifically with the company yet. As far as I can see, our biggest risk was the gluten-free pizza as it was ordered in from Boston Pizza. We have had it before with no effects, but tonight he had very loose stools and complained of a bad tummy (doesn't complain of discomfort very often). He did have his first day at Kindergarden today, but I think we are ok there. There are so many allergies and food issues in that class the teacher is nearly paranoid about food. Also, I made the playdough for the whole class, so I know we are okay there.

lovegrov- we are in Canada, so not sure how many differences there are from the US. We haven't done any fast food fries except New York fries once or twice and they claim to be safe, also don't have things like nuggets, etc that share friers. I guess it is just frustrating because I feel like we have been trying SO hard and making so many changes and not taking any chances and we aren't getting the results I had expected. As far as what is a normal number of diarrhea- I have NO idea! I would love to get an answer to that. Compared to my other children that use the toilet, his stools are SO very different- in frequency and consistency. The closest to 'normal' that he gets will maintain some form in the toilet. More often it is small, fluffy, non forming pieces. As for frequency, I would say he has full blown diarrhea 4-8X/month. That seems like quite a bit to me, but perhaps it is more the norm for others? Definately more frequent than the other children in our family.

We were also told that it can take a year to heal and see full improvement. A year!? At our intial appointment I was told 4-6 weeks. That is a HUGE difference. What has your experience been?

Ok, one more question- since his initial blood results were on the low side of abnormal (the anti-tissue transglutaminase). Our parameters were if over 7 it is abnormal and Jacobs were only 15. I've heard many have numbers in the high hundreds. Does this number correlate to the amount of damage that was on his intestine? We did have the scope to confirm diagnosis. With a number this low, would that impact how long it would take him to heal? He has been symptomatic since 6 months of age (chronic diarrhea, fatigue, etc) but had no wasting, cramping, etc. He was diagnosed just before his 5th birthday.

So many questions. I totally appreciate any and all help and insight you experts may have for me!

Also, I called again today and the results still aren't in!!ARGH!!!!

[T.H.]

I know for us, we're still 'tweaking' too. We've been gluten free a year now, and just realized that the company that makes all the oils we've been using also processes wheat germ oil on the same lines as the other oils. It has the possibility of contaminating any oils made on the same line. My daughter periodically was still having tummy aches, and we think that was it.

Another bit of tweaking for us was nuts. My daughter started complaining that nuts were hurting her tummy; I was worried that she was starting to have problems with them. Just found out that the nuts were processed in a facility that also processed wheat products. I didn't think it would be an issue for her, but either they have poor enough cross contamination practices or she's sensitive enough that it's bothering her.

Honestly, as completely and utterly crummy as it is? If your little guy is still having trouble, I would cut your little guy's processed food completely. We ended up doing that with our kids - you could hear the angsty crying from outer space, I'm pretty sure. Our mantra has become: you don't have to like it to not be hungry, you just have to eat it.

We cut everything but the basics: grains, meats, veggies, fruits. And then we did a food journal to see how they were doing. We found a few foods they had problems with as we slowly added food back in. And we found a few 'gluten free' pre-processed foods that had enough gluten in them that they were not good for our kids, too.

It was so so hard to do it that way, I'll be honest. I felt so horrible seeing the kids miss the foods they liked, but it really did make it possible to track down what was bothering our midgets MUCH better. My daughter was easy - she reacts quick. My son has issues like yours, where it shows up the next day, so that's a bit trickier.

Oh! You mentioned dairy - you may want to cut that. Many celiacs are lactose intolerant when they go gluten free, and so they need to go dairy free for a few months or it takes them longer to heal.

For the foods you mentioned, my daughter could react to the following: yogurt, peanutbutter, Grimm's gluten free corn tortillas, cheese, gluten-free luncheon meat if it was sliced in a deli, granola bar, gluten free pizza, swedish berries.

Doing what you mentioned, checking with the company, is where half of our tweaking has comes in. Figuring out exactly how sensitive our daughter is has been the other half of our tweaking. Foods processed on the same line as gluten products, no matter how well it's cleaned, has been a problem, even if it's labeled gluten free. Food made in a facility with wheat seems to depend on how well the company does on avoiding cross-contamination. I've noticed anything that involves grains or nuts has been a higher risk in 'not gluten free ENOUGH' for our daughter. My father, with the same condition, can eat anything that meets the gluten free standard, though. Everybody's different, yeah?

Also, Smith's and fry's grocery stores say that meats sliced in their deli are not safe for gluten-free diets because the risk of cross contamination is too high. I imagine the same is true for most grocery store delis.

For kids and how quickly they heal? at most 3 months to heal, is what I heard for kids. I couldn't swear that this is accurate, though.

I'm not sure how damage and numbers correlate, but I can say that numbers and sensitivity to gluten don't seem to match, or symptoms beforehand. My daughter was asymptomatic - we only tested her because I came up positive. She had low numbers, but she seems to be more sensitive than most of the celiac kids we're getting to know, so the numbers don't seem to correlate that way, anyway.

Don't know if any of this has been any help, but hopefully so. Wishing you good luck!

[weluvgators]

weluvgators- would you be able to explain what you mean by tweaking and refining your gluten avoidance? I feel like we have the 'basics' down, and that is as far as the "help" goes from the GI Dr and dietician.

Yep, the basics only go so far from the GI Dr and dietitian. We got "lucky" in that we have multiple family members that have been helpful in our tweaking and discovery process. And we continue to work on our overall health and wellness with a gluten free diet as our cornerstone. We have had to eliminate most processed foods, but that is also helpful because it greatly improves your detection skills and abilities (far fewer variables). We have had periods of time that involved absolutely, positively no eating out. We have done multiple elimination/addition diets over the time to better understand cause and effect of foods on our systems. We plan to continue with more elimination/addition diets as we try to root out some of our lingering issues (ironically enough our lingering issues only present when we need to be in "shared" spaces - aka gluten filled places). But we are trying to uncover if there are any other issues, and we have been doing that for some time.

In looking at your son's food list, there are many things that we would not eat. We would be really sick on a diet like that. And I am sorry to even say that . . . I feel badly, as I know that it is not a popular thing to say and hear in our current culture. We can never forget that the recommendation for "gluten free" foods "limit" standards at 20 ppm were set with the consideration that "packaged" foods are only a PORTION of a person's diet. Our baseline diet has settled to be primarily no gluten, dairy or soy. We have had other foods on our elimination list in the past, but nothing else has proven to be problematic in well sourced, whole food addition testing. We try and buy bulk, and we are very careful in food sourcing. We have used hundreds of home testing kits for gluten and found others that test their foods for gluten too.

Moving to a primarily whole foods diet was the most helpful. It really helps to eliminate variables for better elimination/addition testing too. It also helps to remove the "processed" food gluten contamination variable! But never underestimate where the gluten may be lurking, as it is hard to do all of the necessary facility checking that our condition really requires. I often find that the gluten contamination was rarely coming from *just* one place, although I think that we are far more dialed in now. Every little bit counts, and it is impossible to avoid all of the little bits! Is anyone else advocating for a gluten free planet yet?

Grains are another big story too, but I would move to the unprocessed whole foods diet first and see if any issues remain. I hope it helps!

[concernedmamma]

Hello Again!

Well, we got the blood work back and the result was great- 1.7 (over 7 is abnormal). I guess that is a good thing, right!? Am I correct in assuming that this means we are doing a good job of eliminating Gluten from his diet? Perhaps his "normal" with stools is on the looser side? I know as far as the medical professionals are concerned, it means everything is good. How about you real life experts- can I sigh that sigh of relief yet, or should I still be concerned?

Thanks so much!