Mosaics

First of all, you need to change your eating habits for your children. They need to learn to eat right and they will learn by your example. Having to feed children three meals a day should force you to broaden your eating horizons. Your children won't be healthy eating junk all day. I know it is tough to change eating habits, though. I've had a hard time with that, too, although my diet has always been pretty varied. You can get good gluten-free bagels (Kinickinick sp? brand comes to mind). I eat Van's gluten-free frozen waffles for breakfast almost every morning, but you can make things like grits, bacon, eggs, etc.

In my experience, lunch is the most difficult meal because I grew up eating sandwiches for lunch. Now if I want a sandwich, I have to bake bread first because I can't stand the storebought rice bread that is available to us. I use the Chebe bread mix and buy it by the case on-line. It's quite a bit different that regular bread, but you get used to it. Otherwise, think ahead and have the makings for simple meals on hand.

You probably know this, but you need to have your children tested, too. celiac disease is genetic. Both of my children inherited it from me and three of my mother's four children have it (including me). Even though celiac disease sometimes affects our reproductive systems, it sounds like you don't have those problems, so I wouldn't be too worried about having more children. Just know that you have to maintain your gluten-free diet so that your baby gets adequate nutrients from your body. I had no problems with my pregnancies either and I had healthy babies. But then, my celiac disease symptoms didn't start showing up until after I turned 40.

My advice to you would be to just read as much as you can about celiac disease and the gluten-free diet. Celiac.com is a great site for information and it even helps just to read the blogs or discussion forums.

The doctor has said that it looks like you have celiac disease. You have the symptoms. Why are you still assuming that you don't have it?

Going on and off gluten so quickly will not make any difference in your tests. You have to have been off gluten for at least six weeks for it to have any effect on your tests. If you are off gluten for an extended period of time and need to do a gluten challenge, you have to eat gluten for several days (maybe weeks, I don't remember). Also, you can have a DNA test which does not require a gluten challenge so that you don't have to go through the discomfort of eating gluten just to see your doctor or be tested.

Insist that your doctor test you even though he may object and tell you that "celiac disease is rare".

They're cute little donkeys. Not the miniature because they wouldn't be big enough to chase off coyotes, but still kind of smallish.

There are a couple of other places on this site you can go to for help.

The discussion forum where other celiacs talk about doctors:

https://www.celiac.com/forums/forum/6-doctors/ 

And a list of doctors by state that specialize in celiac disease:
 

 

You've got "Michelle" down at the bottom of your post. Is that your name? That's my name, too.

It sounds like you've really educated yourself in preparation for your step-daughter's arrival. I think that's great. It will be tricky having one celiac among a family of non-celiacs. Both of my children and I have it, so I was able to make my kitchen completely gluten-free. My husband eats whatever I buy and cook and he's fine with it. Every once in a while, he'll buy some crackers or a loaf of bread for sandwiches, but that is rare and he is careful not to cross-contaminate.

I would be curious, though, as to which side of the family your step-daughter got celiac disease from. Since it's genetic, it's very likely that either her father or her mother have it. If nobody knows, then they should get tested because any of their other children can have it, too. If it's her father (or his side of the family) and you've had children with him, you may have more celiacs in your household that you realize.

Well, this is something I had wanted to do while my kids were growing up so that we could learn together. I homeschooled my kids for several years and it would have been ideal to include gardening, etc. in their educations. But my husband, also a city boy, didn't want to do it at all. Plus, he had to be in the city for his job.

Now he's more flexible with where he can work and we are expecting an economic crash, so it was his idea to get some acreage and become as self-sufficient as possible. We're both nearing 50 years old and at this point, I rather saw myself as having a flat in Spain with no yard to take care of and relatively carefree. But...here I am, starting a whole new life and fixin' to be an empty nester with my youngest going to university this fall and planning to get married next year.

Despite my wish for a flat in Spain, I am enjoying this experience very much. Surprisingly, my husband is loving it, too. He loves getting out there on the tractor, plowing and mowing. He has even tackled the house remodel, tearing out the kitchen with gusto.

He cracks me up, though. He is such a city boy that he has never even seen a tick. So he is obsessed with ticks. He's always afraid that one is in his hair. He saw a little hopping bug not too long ago and exclaimed, "It's a tick!" No, honey, ticks don't hop. And he was sure that he had a tick when he felt a little bump on his scalp a few days ago. I had to root around in his hair until I found the culprit...a tiny bit of drywall.

Cathy, all the best to you in your new venture. You're lucky to have a husband with farming experience. My husband and I have none, so we're just learning as we go and getting lots of advice from friends. We

I planted a garden for the first time in my life and it is exciting to watch the little sprouts come up. We're making good progress on the house and hope to be able to move in some time this summer.

I'm not a doctor and am just going by what I've observed, read, and learned from my own doctor, so make sure you do talk to your doctor about these things. It seems that some nutrients are absorbed and some are not...otherwise, I suppose we'd all be deficient in all nutrients. I don't know why or how these things happen. Personally, I haven't been deficient in any nutrients that I know of. My blood tests always come out normal. On the flip side, my daughter, who also has celiac disease, was severely B12 deficient. That's how I found out about the link between fatigue and B12, she's in her early 20's and was exhausted all the time, just wanting to sleep, sleep, sleep. That's not normal, so we had her checked out. Her doctor gave her a series of B12 shots to boost her levels back up to normal and recommended that she take the sublinguals. It made sense to me.

Your doctor can give you the shots and the sublinguals can be bought at pharmacies or health food stores...really, anywhere that vitamins are sold. We get my daughter's sublinguals at Whole Foods grocery store. I don't know if all vitamins come in a sublingual form, though.

I'm not sure I understand your question, "Are there other things that go along with celiac?" But there are some lists of diseases and disorders on this site that are associated with to celiac disease.

Go here for a list of diseases [i]definitely[/i] associated with celiac disease:

[url="https://www.celiac.com/articles/81/1/A-List-of-DiseasesDisorders-Definitely-Associated-With-Celiac-Disease/Page1.html"]https://www.celiac.com/articles/81/1/A-List...ease/Page1.html[/url]



And here for a list of diseases [i]probably[/i] associated with celiac disease:

[url="https://www.celiac.com/articles/82/1/A-List-of-DiseasesDisorders-Probably-Associated-With-Celiac-Disease/Page1.html"]https://www.celiac.com/articles/82/1/A-List...ease/Page1.html[/url]

Your doctor sounds like he/she just doesn't know anything about celiac disease and isn't willing to learn. I'd definitely find another doctor that wants to help you.

This site has a list of doctors that specialize in celiac disease. Here's a link to the list (below). Maybe there is one close to you, although I see there is only one in Oregon. That doesn't mean there aren't any others, but I suppose those on the list are recommended by other celiacs.

[url="https://www.celiac.com/articles/277/1/United-States---Doctors/Page1.html"]https://www.celiac.com/articles/277/1/Unite...tors/Page1.html[/url]

Doesn't your doctor have any suggestions? There are all kinds of energy drinks available. Are you B12 deficient? That could be causing the fatigue. You can get shots or take supplements to boost your B12 levels. Also, you could take Lactaid pills so that you can eat/drink dairy. I haven't checked to see if Lactaid pills are gluten-free lately, but they used to be. When my son was lactose intolerant, he drank Lactaid and/or Dairy Ease milk and he took the Lactaid pill when he wanted to eat other dairy products. That worked for him. Since he went on the gluten-free diet, he is no longer lactose intolerant so that's not an issue for us anymore, even though I still buy the Lactaid milk because that's what we're used to. Have you tried goat milk? It's supposed to be easier to digest.

We all start out with a lot to learn.

I saw on your profile that you are suffering with fatigue. Your doctor will, or perhaps already has checked your blood for B12 levels. If you are low on B12, that could be causing fatigue. You might want to mention it to him, just in case. If you are low, you can get B12 shots to boost you up back to normal. But if you want to take an oral supplement, it is recommended that people with celiac disease take a sublingual tablet rather than the regular pills that you swallow. The reason being that if you are B12 deficient, that means you aren't absorbing nutrients in the normal manner and if your intestines are not able to absorb nutrients from food, they will not be able to absorb them from a pill that you swallow. A sublingual is a pill that dissolves instantly in your mouth and will absorb into your body rather than passing through it with no effect.

Biopsy, as in endoscopy? No, it doesn't hurt. They'll put you to sleep and you won't feel a thing.

As for lactose intolerance...I've read that about 50% of people with celiac disease are also lactose intolerant. However, it often goes away after being on the gluten-free diet. That happened with my son. He had been lactose intolerant ever since he was a toddler. He started the gluten-free diet at around age 14 and after being on it for about a year, his lactose intolerance went away. He can now eat as much dairy as he wants without any problems. Also, if you are lactose intolerant, you don't have to give up dair. You can switch to Lactaid milk (or any brand of lactose free milk). We're so used to it that I still buy it even though none of us are lactose intolerant. When my son was lactose intolerant, he took the Lactaid pills whenever he wanted to eat dairy and they really worked.

I don't think you should be overly worried about infertility. Personally, I do think there is a link between celiac disease and infertility, but, IMO, it is rare. My Mom has celiac disease and had four kids, no miscarriages, no problems. I had two kids with no miscarriages or problems. All children were normal birth weight and healthy (except for celiac disease). And I conceived at the drop of a hat - didn't even have to "try" at all. It was just, "Oh, let's have a baby...OK!" Boom, I was pregnant.

All of your family is gluten intolerant? It should be much easier for you if all of your family is already eating gluten-free. There should be no gluten-containing food whatsoever in your home. Why have it there if nobody can eat it? I keep a completely gluten-free kitchen and anyone who comes to my house eats my gluten-free meals. Sometimes a guest will bring a gluten food, but I make sure that when they leave, they take the leftovers with them.

My son, who is almost 19 now, was diagnosed with celiac disease while he was in jr. high. He had the same issues while going to school. He had to take his lunch. I'm certain that he cheated on the diet sometimes while he was at friend's houses, but over all, he tries to stay on it. I know it's was hard when he's at a friend's house and everyone else is eating pizza. They usually didn't give a thought to what he might eat.

I'm lucky that most of my friends and relatives try to make sure that there is something gluten-free at any meal that I will be attending. But then, I'm 48 yrs. old and my friends are grown up. All I can say is that you just have to get used to taking responsibility for your own self. You'll have to take food with you to parties or eat before you go. There is almost always something for me to eat at any party I go to, but if it's a situation in which I can bring food, I take a gluten-free dish (or two) to share with everyone.

There is a discussion forum on this site for kids with celiac disease. I'm sure they would have lots of good ideas for you. Check it out if you haven't already:

https://www.celiac.com/ 

Oh, and it really does get better with time. It just becomes a part of your life.

There is also a list of "safe" and "unsafe" ingredients. I suggest you print them out and keep them with you so you can check ingredients. It will be come second nature before long and you'll automatically know what you can and can't have with few exceptions. Here's the link for those lists:

Safe ingredients:
 

 

Unsafe ingredients:

 

I'm sure she'd like to not eat gluten, but I think the issue is that she wants to get tested for celiac disease. If you are gluten-free when you get the blood test, it sabotages the results.

Sounds like Dermatitis Herpetiformus, a common rash for celiacs. When you see the doc, make sure you tell him about the rash. They can actually test the rash. Before your appointment, research a little about dermatitis herpetiformus and be prepared. I've read an article about testing for the rash and I seem to remember there is a certain area of the rash that the culture is supposed to be taken from to get a correct diagnosis.

I've been having problems with itchy skin since last summer. I don't have a rash, there's nothing to see, it just itches, especially on my head. The dermatologist gave me some cortisone cream for the itching around my waist area and some medicated shampoo for my head. My body has stopped itching, but the shampoo didn't work. I'm very careful about my diet so that I don't get any gluten, so I'm not sure if the itching is related.

Hmm, that may be the case. They always rinse the blenders, but that may not get everything out.

It's Kimball Genetics and they do genetic testing. You don't have to be eating gluten to take the test. I think it may be a mouth swab. They send a kit to you, you take the sample and send it in for them to test.

A DNA test might be an option for you. It's done through the mail so you wouldn't have to wait

Open Original Shared Link 

I contacted this lab to find out how much their Celiac DNA tests are. They responded back:

Thank you for your inquiry. The list price for the Celiac Disease DNA Test
is $395. Patients who enclose payment with their sample receive a 10%
discount (check or credit card) bringing the price to $355.50. In addition,
we offer a family discount. After the first family member is tested at the
$355.50 rate, each additional family member (immediate and extended) is
entitled to the family discount rate of $316.00 for upfront payment. These
samples can be sent in at any time.

Your insurance, or whatever Canada calls their plan, might pay for it or reimburse you. I know that some U.S. insurance companies will.

I'm sorry you're having such a hard time. Don't be discouraged, though. For many people, going on the gluten-free diet usually helps many symptoms go away. My sister was diagnosed with RA, but her symptoms went away when she went on the diet. They return if she cheats, though. If you need to take vitamins, look for sublingual ones. They dissolve quickly in your mouth and are absorbed immediately into your body rather than going through your damaged intestines, which aren't likely to absorb the nutrients. My daughter takes a sublingual B12 because her levels were outrageously low.

In my experience, the gluten-free diet is only expensive if you feel you must have the speciality items like bread, pasta, gluten-free flours, and prepackaged foods. It's fairly easy to eat healthy and gluten-free without added expense if you stick to things like fresh veggies and cuts of meat from the grocery butcher. I've found that gluten-free brands of packaged cereals are about the same price as the mainstream brands. If you can't afford the gluten-free pastas, sometimes rice is a good replacement and it's cheap.

I don't know anything about losing hair, but I remember someone else writing about it in their blog a few months ago. Go to the forums on this site and read what people have to say. There is a wealth of information there and a lot of people with the same problems you have described. I'm sure they can be helpful and you'll more, and quicker response than on the blogs.

https://www.celiac.com/ 

I have a lot of good gluten-free recipes if you need some help with that. Where do you live? There are celiac support groups all over the country. It might be a good idea for you to get involved with them.

I started out doing the same thing you're doing - checking products on-line, e-mailing and calling companies and keeping a 3-ring binder with all my info, including the lists from this site for "safe" and "forbidden" foods. I bought a Palm Pilot PDA and transferred all my data onto it. It is so great; much more convenient than carrying a binder. It has a feature called "Handy Shopper" to keep my grocery store lists on. I also keep a list of restaurants and which foods they serve that are gluten-free.

It eventually will all end up in your head and you won't need to refer to your lists very often, but it's nice to have when you're getting started and as a back-up.

What? Why don't you eat? How long have you been not eating? How long do you intend to not eat?