Asymptomatic

[katbaloo]

I'm new to forum. Posted "info appreciated" and got great feedback but I think our situation is opposite to cases I've been reading where symptoms are present despite negative test results.

My teen DD has no symptoms what-so-ever, with or without glutens but got positive blood test. (she was tested due to her type 1 diabetes) Therefore this is my dilema. Biopsy was last week - no results as yet. Should the results come back negative, what purpose would a gluten-free diet pose?

Conversely, if it comes back positive and we do begin the gluten-free lifestyle, how will we know there's improvement if we don't have a sympomatic benchmark to which to compare?

My head hurts!

[April in KC]

Should the results come back negative, what purpose would a gluten-free diet pose?

Conversely, if it comes back positive and we do begin the gluten-free lifestyle, how will we know there's improvement if we don't have a sympomatic benchmark to which to compare?

Hi! I feel for you. I am not currently symptom-free at 34, but I had quirky symptoms for most of my growing up life, and I missed getting diagnosed as a result. I had difficulty conceiving my first child (over a year of trying), and I also had to go through six difficult pregnancies and three miscarriages to get my three beautiful kids. Celiac was probably involved.

Your daughter already has one set of dietary restrictions; I can imagine that it's difficult to launch into another without understanding the benefits. My son does not have Type 1, but he has a severe peanut allergy (anaphylaxis) and already is denied many foods that are not safe from cross contamination. The Celiac diagnosis seemed like a setback at first, but now we're dealing with it fine.

For your first question, you indicated that she "tested positive"... so she is making antibodies that were detectable through her blood work. So, one way of looking at that is, symptoms or no symptoms, gluten is making her sick. The presence of antibodies means her immune system is reacting to it in the way it would react to an illness. You know how you feel when you're fighting off an illness? Your daughter might be feeling less than 100% (without knowing it) because her immune system is reacting to gluten all the time. So, the benefit would be to get her healthy, give her immune system a break and (possibly) feel even better than she does already. It might also prevent her from having fertility problems, miscarriages, full-blown celiac symptoms and cancer risks down the road. You can ask the doctor if he would diagnose her as "gluten intolerant" on the basis of the blood tests alone. That's saying less than Celiac, but gluten intolerance itself is a reason to avoid gluten for life.

On question number 2 (also could apply to 1), one way asymptomatic people monitor their condition is through the blood work itself. You can have her tested again in 6 months, and yearly, to monitor her dietary compliance and her immune response to it. If she's staying gluten free, her blood tests should come down over time into the normal range.

You might want to make friends (online or in real life) with a symptomatic Celiac who can help check out your daughter's foods from time to time. Not having symptoms would make it very difficult to know how to avoid hidden gluten. Coal miners used to take a canary into the coal mine because the canary was more sensitive to the air quality. If the canary died, the miners got out. It's an inexact analogy, but your daughter needs to befriend a "canary" who can say, "oh hon, I wouldn't eat that brand of snack if I were you."

April

[alamaz]

Just as another perspective, growing up I thought I was normal and just like every one else and every one had the same issues I had. Now that I'm a diagnosed celiac after the symptoms got extreme in adulthood I can look back and see I was never "normal" I just never knew any different because I had never felt any different.

I would say since you had a positive blood test then your daughter needs to stick to the gluten-free diet. You could also do genetic testing to see if for a fact she has the genes for the disease. But honestly, the blood test is all you need.

Amy

[elye]

I have been a type one diabetic for many years, and was diagnosed with celiac two years ago after a positive blood panel and then biopsy. I had NO symptoms of celiac...the diagnosis came right out of the blue. I had borderline low iron, but that was it. Since then I have learned how autoimmune diseases tend to cluster together: one in eight type one diabetics will also be celiac. So, if your daughter is gluten intolerant, it would not be a big surprise.

One thing that has happened to me since going gluten-free: I now DO get all the symptoms that I never had before when I accidentally ingest gluten: cramps, bloating, diarrhea. Since my lower intestine has now healed, I can feel the damage being done. I guess it's Mother Nature's way of letting me know (constantly!) that I did the right thing by going off gluten, and I'm motivated to stay away from it. It was tough at first to know if I was really "gluten-free", but gradually the symptoms started appearing if I cross-contaminated myself or cheated a bit. So this may happen with your daughter if she goes gluten-free, fortunately or unfortunately!

[katbaloo]

Since there are no "emoticons" for teary-eyed...I'll just let you know that your replies have reduced me to tears! (Thank-you so much. I noticed that you're from Canada as well. I've been told that there are different "rules" for US, Canada and Europe - true?

I'll now be able to tell Ren

[Cam's Mom]

hi!

My daughter was diagnosed a year ago with both type1 diabetes and celiac. And I have also heard that it is somewhat common for kids with JD to present with "silent" celiac. my daughter was also asymptomatic util the last 2 months before diagnosis (after we learned about the JD) and the most important symptom was that she was having severe insulin reactions. Her blood sugar would go low and then we would give her glucose (ie. juice) and she would not come back up because she was not absorbing the sugar. In fact we took her completely off insulin at one point because she was not absorbing anthing she ate - but that's another story.

Flash forward one year . . . she is a totally happy "healthy" well adjusted kid (she'll be 7 next month). I have become a pretty good gluten-free baker and she loves to eat all the usual kid stuff - waffles or pancakes every morning or cereal, pb&j sanwiches, pretzels, chips, fruit etc. for lunch and whatever other kids eat for dinner: lasagna, mac n cheese, pizza, chicken nuggets, veggies, burgers you name it. The worst part about the combo is that gluten-free food tends to be higher in carbs than it's gluten counterparts. The main issue is completely social - not going to her favorite restaurants, bringing her own food to birthday parties and extended family gatherings. These will never be ideal but you'll develop your strategies.

My daughter shows no symptoms still even when accidentally glutened. our only clue is her tTg which still remains high. But our good inicators are that she is growing, gaining weight and no longer has mysterious low blood sugar that can't be treated. Other than that you just have to do your best and if she's growing and healthy and her blood sugar is in good control - you've probably got it (and you may have her celiac panel re-run at least annually to see how it is going).

I would be happy to offer support, recipes, our food list, menu ideas, etc. just PM me if I can be of help. You got used to the diabetes, you'll get used to this too - it's just a tough combo.

Good luck!

Barb

[mouse]

This will be a short reply as others will post more.

The nurse is way off base on the compliance. Another that does not know a whole lot about Celiac. My doctor that diagnosed me, thought that after a year that I could have gluten ever so often. I was his first Celiac and have taught him about this disease. He has diagnosed so MANY since me. He now knows better and that this is a life long committment to being gluten free. You are right in that even tho she does not expierence symptoms, the damage is still continuing. Her villi are so damaged that she is probably not asorbing her vitamins and nutrients. My suggestion is that she have a vitamin test and include D vitamin and others that some posters will add to this. These are not usually done in the regular vitamin test and many of us were deficient in these vitamins.

Be thankful that this was caught so soon before lifelong other auto-immune diseases cropped up. There are several on this board that deal with being a Celiac and type 1 diabetes.

Welcome to the forum and believe it or not, this is all doable.

[SunnyDyRain]

We were told: Absolutely Positive. According to the nurse, scope revealed "total villi atrophy". (not sure what that means but it doesn't sound good!)

"Total villi atrophy" means she probally is not absorbing much nutrients at all and her intestines are pretty much useless. I'm really suprised she had no symtoms with that much damage.

My heart goes out to you and your family. I have been on the diet for 3 weeks now, and while it is an adjustment, i'm not finding it hard. Probally because of her diabetes, she is restricted allready from some of the things I miss the most... the breaded sweets.

My biggest help in the mindset is that gluten = posion. It's different than diabetes, many diabetics can take shots or pills to help. Once I got that into my mind, it was so much clearer and easier to say no.

Good luck.

[Cam's Mom]

Hi - me again. Sorry I had not thoroughly read your second post before my first post . . .

Anyway, partial compliance should really not be an option. I understand that you want to keep her diabetes in control and that is a priority but as I mentioned in my previous post, they are not independent of one and other. If she has total villi atrophy then she is not absorbing nutrition well. Not only is this bad news nutritionally but it will reak havoc on her blood sugar control.

You should try your best to comply with the diet (150%) and you should notice her need for insulin to increase. It will increase even without an increase in her carb intake just due to her healed villi absorbing more nutrients. This is really important. Try not to think of celiac and JD separately, I think you have to consider them a whole package and work from there.

Is your daughter doing multiple daily injections or the pump? My daughter is pumping and that has helped us a lot. I think that you might find that once she is gluten free there were more symptoms than you thought there were - they are just really subtle.

Please e-mail me with any questions and tell me what foods your daughter likes to eat and we'll figure out a gluten-free menu that makes her happy with minimal changes. This is doable and really needs to be done. So sorry for all your stress - believe me, I KNOW!!!

Barb