Sil Just Diagnosed

[123xyz]

My husband's sister was just diagnosed with Celiac disease, after 2 or 3 years of thyroid and vitamin deficiency problems. They speculate that their father's mother had the disease too. (She died in her 80s of breast cancer, but had similar problems as my SIL has recently faced.)

My husband has suffered digestive issues his whole life, as well as general fatigue, moderate depression/anxiety, and difficulty losing weight. No horrible, acute symptoms. He is going to be tested ASAP.

We have three young children who all seem healthy, no failure to thrive or other apparent problems. I know that this is a genetic disease that runs in families.

My questions are: If my husband tests negative for Celiac disease, is it possible that he has it and it hasn't been "triggered?" Do the blood tests pick up whether he has the disease whether or not it is active? If he is negative, are my children "safe" from the disease? Or can it "skip" a generation? If he is positive, should our children be tested?

Also, if he has Celiac disease, do I have to clean all the wheat/rye/barley out of my kitchen completely? Meaning, can I cook for him, and for everyone else--or is the fear of contaminating his food so serious that I need to just have everyone on a gluten-free diet and ban W/R/B from the house?

I know this might be premature, considering that we don't know if my husband has the disease or not, but I am so concerned about him, our kids, and what this will mean to their long-term health. My SIL also has children, so I would like to know more about these issues to be of help to her too.

Thanks in advance for your help with these questions!

[April in KC]

My questions are: If my husband tests negative for Celiac disease, is it possible that he has it and it hasn't been "triggered?" Do the blood tests pick up whether he has the disease whether or not it is active? If he is negative, are my children "safe" from the disease? Or can it "skip" a generation? If he is positive, should our children be tested?

Also, if he has Celiac disease, do I have to clean all the wheat/rye/barley out of my kitchen completely? Meaning, can I cook for him, and for everyone else--or is the fear of contaminating his food so serious that I need to just have everyone on a gluten-free diet and ban W/R/B from the house?

I recommend further reading here - and perhaps get a good book. Celiac seems to have a genetic component and also some unknown trigger, perhaps other genes, stress, illness, increased exposure to gluten, etc. If you draw a big circle with 100% of the population in it, you could draw a smaller circle with all of those with the HLA-DQ2 or HLA-DQ8 genes necessary to have Celiac. That smaller circle would still represent about 35% of the population in the U.S., so pretty big. Within that genetic circle, there's an even smaller circle who have diagnosable Celiac Disease - maybe as high as 1% of the total U.S. population. Within those who have Celiac Disease, there are those with Classic Celiac Disease symptoms, those with Atypical Celiac Disease, those with Latent Celiac disease, Silent Celiac Disease, etc. You might google "Celiac Iceberg" for a description of how symptoms typically break down. Your husband's symptoms could be Classic Celiac, with GI problems, fatigue, mood issues, etc. Your description of him pretty much matches that

of my DH. My DH's symptoms were not life-threatening, but they affected the quality of his life, since he would have unpredictable bouts of GI problems, overall fatigue, etc.

In our family, my son and I were diagnosed first, and my husband only got tested about 6 months later after he noticed that he felt better eating our gluten-free food at home, but not so good after eating gluten-containing foods away from home. So through coincidence, two spouses both can have it.

If your husband tests positive, have your kids tested right away and then once every couple of years in the absence of symptoms. Or consider having the genetic test for them so you'll know who will NOT have a chance of developing Celiac Disease in their lifetime and who will have a chance of developing it.

The following applies if he gets a positive diagnosis...

As for your kitchen, you will need to be very careful if you are going to try to do both types of cooking in one kitchen. Your husband needs dedicated drawers to store his own condiments that no one else will use (cross-contam from knives inserted in jar, nozzles touched to bread, etc.). He will also need his own toaster, pan & strainer for boiling rice & rice pasta, ones that are never used for regular pasta, etc. No reuse of cookie sheets, etc. - at bare minimum line pans with parchment paper. Home baking is an important part of a Celiac's life - so invest in a new muffin/cupcake pan for him. 123GlutenFree makes an amazing chocolate bundt cake mix - it comes as a huge 12-cup bundt mix, but I bought some smaller 3-cup cake molds and make 4 cakes each time...we eat one, give one away to Celiacs we know, and freeze two. Most gluten-free brownie mixes are pretty tasty - use safe pans.

My (non-Celiac) extended family loves my gluten-free lasagna that I prepare using Tinkyada gluten-free lasagna noodles. Tinkyada noodles work great in any pasta recipe that is flavorful, i.e. meat sauces, etc. Corn quinoa pasta is also good for some recipes - I prefer it for my son's favorite lemon pepper fettucini. Basmati rice has a lovely flavor. I think you should try some of the "best" gluten-free foods and switch your whole family over to those you enjoy, just to reduce the overall level of gluten in the kitchen. It may also help reduce the sense of loss your husband may feel if he's not constantly staring at foods he used to enjoy, particularly all the boxed junk food type things, which are big temptations when you're hungry. I know some mixed households, the non-Celiac spouse keeps a stash of gluten goodies in a tupperware container in the garage, and only eats them out there. That's an admirable commitment, but might not be right for every family. Do consider how you feel when you're on a diet and watching everyone around you eat things you can't have - it can be difficult, especially for the first few months.

Do more baked potatoes & rice than you have in the past, using clean pans. Any time you bake from scratch using flour, that's a time to be really concerned and wash/wipe down every counter. The dust gets in the air and settles on everything. When I was really sick and was first diagnosed, I became really sensitive after going gluten free. For the first several months, just a trip through the cereal or bread aisle at the supermarket could send me running for the store bathroom. (I wasn't like that pre-gluten-free diet; and eventually things calmed down again - it was just a temporary period of heightened sensitivity). Heidi Collins is an anchor on CNN - she says that a crumb makes her just as sick as a sandwich. Most of us here sometimes have "mystery" reactions to eating out that must be caused by ingesting tiny amounts of gluten.

Replace your regular soy sauce with San-J wheat-free tamari - you won't miss the old stuff.

Some gluten-free cereals: Rice Chex, Dora, Tigger & Pooh, Little Einsteins, plus numerous ones at health food stores. Rice Krispies and Corn Flakes are NOT gluten-free because of the barley malt.

[happygirl]

If my husband tests negative for Celiac disease, is it possible that he has it and it hasn't been "triggered?" Do the blood tests pick up whether he has the disease whether or not it is active? If he is negative, are my children "safe" from the disease? Or can it "skip" a generation? If he is positive, should our children be tested?

Also, if he has Celiac disease, do I have to clean all the wheat/rye/barley out of my kitchen completely? Meaning, can I cook for him, and for everyone else--or is the fear of contaminating his food so serious that I need to just have everyone on a gluten-free diet and ban W/R/B from the house?

Thanks in advance for your help with these questions!

Welcome to the board!

There are a few possibilities: he won't ever have it, he currently has is (and you don't know it), or he doesn't have it now but could - either tomorrow, or in a year, or 5 years, or 50 years.

Some families have "one" Celiac, and others have "lots" with Celiac.

Overall, about 1 in 133 Americans have Celiac Disease. However, the risk increases with family members who have it. https://www.celiac.com/articles/647/1/Preva...-133/Page1.html

If he is positive, your children should definitely be tested. Same theory applies to them in terms of "will they have it?" Your sister in law's children should be tested. (All first degree relatives, regardless of presence or absence of symptoms, are recommended to be tested after someone is diagnosed.)

There are many methods to 'going gluten free' in terms of each individual household. Everyone finds one that works best for them. Its a broad spectrum.

Keep in mind that it is much better to know all this now: even if your family is not positive for Celiac now, you will now have the knowledge about it, in case they begin to develop symptoms in the future.

A really, really, really good book is Dr. Peter Green's Celiac Disease: A Hidden Epidemic. He is from Columbia University and their center's website is helpful: www.celiacdiseasecenter.columbia.edu

Other helpful resources include:

www.celiaccentral.org

www.celiac.org

www.celiacdisease.net

www.gluten.net

[123xyz]

Thank you for your replies. Obviously, we have to wait for my husband to be tested before we can do anything. But I am really wondering if this is what has been bothering him for so long. If so, the irony would be that he consumes almost all whole wheat products for the health and fiber benefits--but perhaps not benefits for him!

If he is diagnosed with Celiacs, I think we will do a gluten-free kitchen because with little children, I don't think I could prevent them from causing cross contamination. And I realize all the damage that a little gluten could do. The kids and I could certainly get our fill of wheat products outside of home. So...would I have to replace all my old appliances and utensils? Or is a good run through the dishwasher good enough?

My SIL and I aren't particularly close, and she hasn't even told my husband about her diagnosis, just heard about it from my MIL, so I'm not sure how's she's dealing with it. I would imagine it's a pretty big shock.

[littleguyw/CD]

I wanted to say thank you all for posting I got a lot of info from you all! I was wondering about the kitchen part.... our son has Celiac and I have been cooking for him and then the rest of the family!! I need to make some changes FAST!