What Do You Make Of This?

[Debbie44]

My handicapped daughter, age 21, was diagnosed as having celiac disease a few years ago. Her blood test results were highly positive, and her GI specialist wanted to do a biopsy just to confirm, even though he said it was highly probable that she had it. The biopsy was negative, even though she continued to eat a full gluten diet. His advice was to put her on a gluten-free diet anyway. We have done that, (also dairy free) and her once very bloated stomach is now much better, with less diarrhea. The question, she can sneak into the kitchen at night and eat an entire pan of regular brownies with no ill effects, and my husband questions whether we should continue this difficult and restrictive diet, watching for every crumb and grain of wheat?

[eKatherine]

My handicapped daughter, age 21, was diagnosed as having celiac disease a few years ago. Her blood test results were highly positive, and her GI specialist wanted to do a biopsy just to confirm, even though he said it was highly probable that she had it. The biopsy was negative, even though she continued to eat a full gluten diet. His advice was to put her on a gluten-free diet anyway. We have done that, (also dairy free) and her once very bloated stomach is now much better, with less diarrhea. The question, she can sneak into the kitchen at night and eat an entire pan of regular brownies with no ill effects, and my husband questions whether we should continue this difficult and restrictive diet, watching for every crumb and grain of wheat?

The solution is pretty simple. You need to stop leaving regular snacks around the house. Make cookies and brownies substituting gluten-free flours for the wheat flour. Most of them come out exactly the same. The flour only costs a bit more, and it still is lots cheaper than buying them.

[Debbie44]

I thought this was a site for information and shared experience, not judgement.

I have cooked faithfully and separately for my daughter for years. Cooking pots, collanders, toasters, etc. At Thanksgiving, there are two separate turkeys, stuffings, etc. I make many things from scratch, and always make sure she has equivalent treats if feeding the rest of my family something different. My family does not always enjoy the gluten-free foods, and I see no reason to limit their foods when it is not necessary. That is our choice, and not the reason for my question. I wondered about why, if she has celiac disease, there are no ill effects when she does eat something she's not supposed to eat. I just thought someone might have some helpful information.

[aikiducky]

The symptoms can vary a great deal from one person to the next. Some members of this board have had a biopsy showing a lot of damage and still have no symptoms, hopefully they'll chime in. A high positive blood test result tells you that your daughters body indeed does react to gluten, even though she doesn't show obvious outside symptoms.

You said she has "less diarrhea" now, does it mean the D hasn't gone completely away? If she sneaks in gluten quite regularly that might keep her from healing completely. Something you might not know is that it takes the intestines weeks to heal from a "glutening". So sneaking in some gluten even once a month will significantly affect healing.

It might be that you haven't had a chance to see what she would be like when she's completely 100% gluten free, there can be subtle symptoms that are difficult to recognise if they are there all the time. A lot of my symptoms were things that I thought were "just me", turns out that when I had been 100% gluten free for a while they went away.

Pauliina

[jerseyangel]

Hi Debbie,

Possibly your daughter is one of the Celiacs who don't always get GI issues. That can make it difficult because you don't immediately see the gluten causing a problem.

Since she tested positive with her blood testing, she does have it. When she eats gluten, it is still doing damage to her intestines, even though there is no *outward* sign.

I would keep being as diligent as you have been--you are keeping her from all sorts of additional health problems down the road.

I can see how you might be tempted to rethink this, but just know that you've been doing the right thing for your daughter. Quite possibly, her intestine has healed to the point where she just dosen't get the immediate reaction--that's great! Now, it's important to keep it that way.

Don't feel too bad about the occasional mishap--that happens, and you just pick back up and keep going forward. Not that it's ok to eat gluten on purpose, but try not to let this incident get you down.

[Debbie44]

The symptoms can vary a great deal from one person to the next. Some members of this board have had a biopsy showing a lot of damage and still have no symptoms, hopefully they'll chime in. A high positive blood test result tells you that your daughters body indeed does react to gluten, even though she doesn't show obvious outside symptoms.

You said she has "less diarrhea" now, does it mean the D hasn't gone completely away? If she sneaks in gluten quite regularly that might keep her from healing completely. Something you might not know is that it takes the intestines weeks to heal from a "glutening". So sneaking in some gluten even once a month will significantly affect healing.

It might be that you haven't had a chance to see what she would be like when she's completely 100% gluten free, there can be subtle symptoms that are difficult to recognise if they are there all the time. A lot of my symptoms were things that I thought were "just me", turns out that when I had been 100% gluten free for a while they went away.

Pauliina

[Debbie44]

Thanks for your thoughts...I think I just assumed that she would have a stomach ache or some other symptom immediately, but I guess that's not always true? She's only done this "sneaking food" behavior a couple of times, not often. Maybe I need to get all of her test results and review them with a GI person in our area now, and ask some more specific questions. I also think that the dairy slips into her diet more often than gluten, and that might be causing some intestinal irritation as well. I think I was counting on some kind of negative reaction to the foods to help me to keep her compliant with the diet when she makes food choices on her own.

[2Boys4Me]

My son has been on the diet since August 2005. He NEVER EVER had any GI issues. No "D", "C" or stomach aches. We discovered that he has celiac because he was extremely anemic. We are not a gluten-free household, but the only gluten in our house is bread for the other 3 of us for breakfast or lunch or pasta if we are having noodles. If we are having buns with dinner, I make gluten-free buns and we all eat those. Occasionally on Sunday nights my husband makes pizza and we have a gluten and gluten-free pizza. We've found some decent recipes for everything (except brownies) and we pretty much all eat gluten-free if we are at home. I'm not sure what your daughter's handicap is, but perhaps she just doesn't understand that she's hurting herself without being aware of it.

[eKatherine]

I thought this was a site for information and shared experience, not judgement.

I am sorry if you feel that my suggestion to leave safe brownies and cookies around for the whole family to snack on was "judgmental". I know from my own experience that they taste no different from the wheat kind.

[rez]

My son has been on the diet since August 2005. He NEVER EVER had any GI issues. No "D", "C" or stomach aches. We discovered that he has celiac because he was extremely anemic. We are not a gluten-free household, but the only gluten in our house is bread for the other 3 of us for breakfast or lunch or pasta if we are having noodles. If we are having buns with dinner, I make gluten-free buns and we all eat those. Occasionally on Sunday nights my husband makes pizza and we have a gluten and gluten-free pizza. We've found some decent recipes for everything (except brownies) and we pretty much all eat gluten-free if we are at home. I'm not sure what your daughter's handicap is, but perhaps she just doesn't understand that she's hurting herself without being aware of it.

gluten free pantry brownies are DELICIOUS!!!!!!!!!!!

[CarlaB]

Namaste brownies are delicious, too!

[Fiddle-Faddle]

Hi, Debbie, welcome aboard!

The negative biopsy only means that the section biopsied had no damage to the villi. That doesn't mean that there is no damage, and continued ingestion of gluten almost certainly will cause further damage, if not to the villi, than to other parts of the body, including neurological damage.

I don't think anyone was judging you for leaving gluteny brownies out, only suggesting a way that everyone in your household can enjoy brownies without your having to worry. Really, with the right mix or recipe, baked goods can taste just as good as the original gluteny ones! Checkout Annalise Roberts' Gluten-Free Baking Classics. The chocolate chip coookies taste almost identical to Tollhouse cookies, and the cocnut cake is the best cake I have ever tasted anywhere. The submarine sandwich bread rivals any bakery bread, no kidding,my gluten-eating kids scarf it down before I get a chance to!

Many of us have found that making the kitchen either totally or nearly gluten-free has made our lives far, far easier--and just as many of us have found that supposedly "normal", non-celiac spouses and children actually feel better on a gluten-free or gluten-lite diet.

Note--I do NOT suggest a gluten-lite diet for someone who has a diagnosis of celiac--that person really would need to be gluten-free. See www.celiac.com for all the related details, but the number of autoimmune disorders linked to continued ingestion of gluten in a gluten-intolerant person is staggering. Diabetes, rheumatoid arthritis, thyroid disorders, lupus, fibromyalgia--it goes on and on!

You wrote that your daughter is handicapped. I don't mean to pry here, but if she is on the autistic spectrum, then things would very likely improve on a TOTALLY gluten-free and possibly casein-free diet. See if you cna find a copy of Special Diets for Special Kids by Lisa Lewis, which has not only a lot of recipes, but some very, very good explanations of why gluten and casein magnify autistic behaviors.

Of course, when you mention handicapped, you might have just meant that your daughter has a broken leg--which won't be helped by this diet at all!!!

[tarnalberry]

I wondered about why, if she has celiac disease, there are no ill effects when she does eat something she's not supposed to eat. I just thought someone might have some helpful information.

Because many - studies suggest the majority - celiacs do not have the common GI symptoms. They may not have any symptoms but anemia, or osteoporosis, or diabetes, or an autoimmune thyroid condition. That's one of the things that makes celiac so difficult to diagnose, the wide variety of presentations.

[Guest nini]

If the blood test was positive, she def. needs to be 100% gluten-free, The biopsy can only confirm the dx if they find damage, but it can't rule it out. The damage could be patchy, or not to the point of complete villous atrophy yet, or the lab didn't know how to read the slides, any number of things, anyway, to answer your question, MANY celiacs never have any visible symptoms that they know of when glutened, but any ingestion of gluten is still doing damage to the insides and still affecting the immune system. Any ingestion of gluten just sets her recovery back that much further.

Celiac is genetic so she would have had to get it from someone in the family, have all of her first degree relatives been screened for it?

[Debbie44]

You have all been so helpful...thank you.

I can feel your concern that I might not continue with the diet, but of course I will. She does eat completely gluten free, except for the occasional infraction, and I do know that there has been improvement in her health. It is helpful to know that a negative biopsy result doesn't rule out the findings of the blood work.

We actually have the book, Special Diets for Special Kids, and we still use many recipes from it. We have tried going completely Gluten-free Casein-free, but I wavered because it was very restrictive for her, had limited results, and was never actually prescribed by any physician. I'm trying to teach her to read ingredient lists and look for things that will be harmful to her, instead of me being the food police and saying "No" to everything. We have had success with that. As a serious chocoholic, she will be thrilled to try any good brownie recipe!

[jerseyangel]

Debbie,

Try The Gluten Free Pantry Truffle Brownies--they are even better than regular!

[Canadian Karen]

I'm sure she would be in heaven at Outback Steakhouse - and they're Thunder From Down Under..... That has to be the most heavenly, chocolatey, sumpuous thing I have ever tasted!!!!

Karen

[daffadilly]

I offer my appreciation for someone cooking two meals, that is so hard to do. Most of us that are celaic just feed our food to eveyone. At the office I had a chocolate cake & I told the guys that I was not sure they would want any that it was gluten free. they said "it is chocolate cake, what is not to like!!" I had to hide the last piece for myself!!!

Half of people that have celiac also have an intolerance to dairy. You can test for that at enterolab.com they will send the kit, no need for doctor permission.

If you wait for any doctor to prescribe a food regimen you could wait forever. There is a saying that I believe in "mothers know best".

You can also get the gene test at Enerolab.com, they also test for the DQ1 gene which a lot of neurological stuff comes with. Everyone in your family should be tested as it is genetic and you can have total villi atrophy with no symptoms, sometimes that is the worse because at that point when you do start having symptoms it is too late to prevent major damage to other organs or cancer. I do not know how old you are but if you are in your 40's I have found that by the time you are in your 50's, if you have the genes you will have major problems.

I recommend the book "dangerous Grains". There is a lot to learn concerning celiac. Your daughter is not the only one in the family with it, unless she is adopted. In the general population here in the U.S. between celiac, gluten intolerance, & wheat allergy it affects 30% of the population. In my family of DQ1 genes it is about 100%. Me, my two sisters, my two kids, & three of my grandkids, one cousin, my mother who died of colon cancer before we found out about celiac...