And The Results Are In...

[Whatnext?]

So here is some background. April 5th visit with a new doctor. Told her of my lifelong issues with stomach aches and relatively new symptoms of constipation and bloating. She ran blood work which included celiac panel. I got a call the very next day and was told to start a gluten free diet and to do some research. So I did. After just a little research it became apparent that a biopsy is usually done to confirm. And to be honest I really just wanted to know how serious to take this whole thing.

So I called the doctors office back to get a referral. My Dr. was out on vacation, but another Dr. sent me to a GI and for a bone scan (which I also requested). The GI doctor did additional blood work that I requested (based on much of the advise I have read on this forum), all numbers were within normal range. No deficiencies. Bone scan was normal as well. The GI also set up an appointment for an endoscopy. So after just two weeks gluten free, I began eating gluten again until the test, which I had last Tuesday. I just got the call that it was positive for Celiac. I have to say, I am relieved in some way. It is nice to have a definitive answer. Not that I am happy with the diagnosis. I at least have had a chance for it to sink in.

I really think that going gluten free for two weeks, then eating gluten for 2 1/2 weeks, helped me realize how much better I fell off gluten anyway. As soon as I had the endoscopy I returned to gluten free. This time much less sad and angry about the whole thing. I was eager to give it another try with a whole new outlook and perspective. I'm glad that I didn't have to do a gluten challenge for long. 2 1/2 weeks was plenty!

Now, the question is whether or not to test the kids. I've heard pros and cons for both here on this website. My tendency is to have them tested. While none are having digestive symptoms per se, some could be have other symptoms. I have one son who was 'diagnosed' with ADHD. We tried several medicines, but have since taken him off them, they all had side affects I wasn't willing to put him through. He is doing poorly both behaviorally and academically. He is 15. I have another son (11) who seems depressed and I cant figure out what is wrong. He also is having an issue with acne (which seems young at 11) so I'm wondering if it is just early puberty. Or could it be celiac? The other kids don't really seem to have any real issues, but you never know what could happen off gluten.

I know if I do test the kids and any of them test positive, it will be a huge battle. I would almost have to make the entire house gluten free. In some ways that could be easier.

Does any one have any suggestions regarding testing the kids, making the entire house gluten free etc. Or just ways to cope in the beginning, in general? My hardest thing is eating out. I know it makes more sense to cook at home. But I just hate to cook, and we have always eaten out about half the time. Any suggestions?

[ravenwoodglass]

Yes you should get your children tested and also tell your Mother and Father and any brothers or sisters to be tested also. There are some of us who have a mixed house but others who have made their homes a gluten free zone. I am one of the latter. If you do allow the house to be mixed do take the needed precautions like a new dedicated toaster, replace scratched nonstick pans and wooden utensils, get seperate condiments, butter, nut butters etc and do not bake with gluten flours for the rest of the family. It would also be a good idea to restrict gluten eating to one place and teach the gluten eaters to clean up their crumbs so you are not constantly getting CC'd.

[Syl]

I'm happy to hear you were able to have a positive outlook ;] It's not an easy thing being told you can't eat the way you've eaten your entire life, but in the long run it opens you up to so many new and exciting things that almost make it a beneficial disease. Alllmost. I would follow Raven's advice on that one and be sure to get them tested! Perhaps a 6 week gluten free challenge should be discussed with their primary care provide to see if it helps resolve the ADHD symptoms?

For example, when I was growing up I was diagnosed with ADD, and my sister ADHD. They put us on all kinds of meds until they found one that worked, like Ritalin. After discovering I was celiac almost a year ago I had slowly realized that my lack of attention span was really because of Celiac's and all evil gluten. My sister on the other hand suffered from many different behavioral problems growing up, and when I finally got the word to my family that I was celiac, both my brother and sister discovered they had it as well. It is something that shouldn't be taken lightly, that's for sure.

One thing I will add about it tho is that even if you get testing done, like a celiac panel for Tissue Transglutaminase IGA, it can still show negative even if they are Celiac. This was the case for me when growing up as my parents had all sorts of trouble with me growing up as a child when it came to food. Be sure to explore other routes if you do decide to get testing!

As far as the beginning stages goes - be patient. Be patient with yourself and try your best to remain optimistic. It can be rather taxing having to prepare every meal by hand, but it is rewarding in the long run as it will turn you into a GREAT cook! I lived the processed foods diet all the way up until I was diagnosed, didn't know how to make much outside of throwing pasta in water and some sauce on top. Eight months later I've developed more cooking skills then I would have thought possible! You must embrace the change or it will bring you down Eating out might have to take a time-out if you want good results - it is difficult to eat somewhere that is verified gluten free, especially in your beginning stages of healing. Perhaps you could learn to cook more with your kids together, have some gluten free baking fun, and get them interested with you so you don't feel alone in this journey. I can't know the extra strength it takes to raise children AND be Celiac (maybe one day I will), but you've already proven to be tough enough to raise kids, now you can prove to yourself you have what it takes in the kitchen too!

[sb2178]

Definitely have them tested with the basic blood screening. People do question whether to have the genetics run or not. In that case, having a positive test could possibly weigh against you in the health insurance realm while indicating that occasional monitoring would be wise; a negative test means that monitoring isn't necessary unless symptoms appear.

[Whatnext?]

Definitely have them tested with the basic blood screening. People do question whether to have the genetics run or not. In that case, having a positive test could possibly weigh against you in the health insurance realm while indicating that occasional monitoring would be wise; a negative test means that monitoring isn't necessary unless symptoms appear.

So is it best to have the genetic test done, and then blood work if it shows they possibly have the celiac gene?

You bring up another point. Can an insurance company deny someone for celiac?

[sb2178]

An insurance company can deny someone for almost anything. However, having kids fed safe food at school typically requires a diagnosis.

No, I'd have the screening blood work done for them. The potential for avoiding significant health problems is well worth the time, money, and needle stick. Something like one in 10 first degree relatives has it-- so there's a good chance one of them has it. EVERYONE, symptommatic or not, should be screened. I spent a year trying to get my father and his doctor to do the blood work, and they finally did it last week. (Dad said no first; then Dad said yes and doc said no; finally, Dad said do it and doc said ok, if you insist. My mother on the other hand...)

Then, if it comes back negative, think about the genetics. If some/a screening(s) comes back positive, there is no reason to do the genetics. Genetics alone only mean the possibility, so they aren't recognized as terribly meaningful in terms of the person's current health unless you have an iffy diagnosis of some sort. There are also exceptions to the rule, as there are many genes involved and not everyone with celiac disease has the most common ones.

[T.H.]

You bring up another point. Can an insurance company deny someone for celiac?

Yeah, they can, but usually not the ones that you would get from a group plan at work, at least. A Diagnosis of Celiac Disease will also make it impossible to be in the military.

However, a diagnosis may be needed for special dispensations from the school, including college dorms. It can be needed for being allowed to carry special food on airplanes, into amusement parks, in areas that you usually aren't allowed to have food in, too.

with my own experience, I would say yes, yes, and yes to testing - and it should be done every few years, for the rest of their lives, as this can trigger at any point, and do some serious damage before it's done.

And even if the test is negative, I would try them all on a gluten free diet for a few weeks anyway, because some recent studies suggest that the body may be experiencing damage enough to be harmful but not enough damage to give a positive result on the tests, in the early stages of the disease. Or it can be non-celiac gluten intolerance, in which case there IS no test for it except a diet change.

The reason I think this is really important right now is because if your littles DO have Celiac disease, right now is a critical time for them to get off gluten. It can affect their growth during puberty, their future fertility, their mental growth, etc... Puberty is a really bad time for them to be partially starved of nutrients, you know?

My daughter - she had acne starting around 9-10 years of age, along with a lot of anxiety and emotional issues. I had the same thought: is this early puberty or something? These problems have disappeared since she was diagnosed and we put her on a gluten-free diet.

My son tested negative, but since we already had 2 celiacs, we all went gluten free. HE had emotional symptoms that also disappeared on the diet, and came back when we did a gluten challenge 1 year later. So I'm a big believer in trying the diet even with a negative test, as you can imagine.

In my family once we tested everyone, me, my father, my brother, and my daughter all came back positive. Talking to cousins, a lot of their kids have been having 'mysterious' stomach troubles the last couple years that the doctors are dismissing as school anxiety. They are trying to get their kids tested now too.

As for how difficult it is - just...yeah. It's hard. My daughter was 11 when she had to go off gluten and cried for an entire day, and then complained bitterly for at least 6 months straight. It was really, really unpleasant, hard as heck, and sometimes, just freaking broke your heart because other children were able to do what she couldn't.

But now, about 2 years in, she's able to enjoy so much more of life. She's becoming a pretty dang good cook, because I wasn't much of one myself - we ate out a lot, too - but now we have to cook or not eat.

Our mantra has become: you don't have to like this for it to make you not hungry anymore, you just have to eat it.

But better if you like it. :-)

The way we financially have afforded this is that we changed our diets significantly. We don't buy gluten-free cereals and breads and crackers. Instead, we have salads and stir-fries and casseroles, whether it's breakfast, lunch, or dinner. Lighter stuff for breakfast, heavier stuff for lunch, light for dinner. We send glass bowls with snap-top lids for their lunch boxes, or bento boxes. We have insulated cooler lunch bags for taking with us any time we leave the house, so we aren't tempted to cheat just because we're hungry.

It took some getting used to, but now it feels normal, really. :-)

shauna

[Whatnext?]

Yeah, they can, but usually not the ones that you would get from a group plan at work, at least. A Diagnosis of Celiac Disease will also make it impossible to be in the military.

The more I ask, the more I learn. Thanks so much for all the information. Each time I find out more information I have more questions.

Sadly, my teenage son (the one diagnosed with ADHD and has had problems in school) wants desperately to go into the military. He does not want to go to college and I honestly don't know if college is the place for him. He has been talking about the military for almost a year and is very determined.

Maybe the best thing to do would be to test some of the other kids. If I had one or more kids test positive, I would just put everyone on the diet. They pack their lunches anyway, so the school wouldn't be too much of a problem.

I agree that the way to go is to buy 'normal' gluten free foods. My plan has always been to change the way I eat, rather that substitute gluten free versions of items I love. They aren't the same anyway and are expensive (too expensive for a family of 7). I've been eating a lot of rice lately. I hope to broaden my options soon. It is just soo much to learn in the beginning.

I have been trying to get my sister and parents to get tested. My mom asked her doctor and he told her at her age he wouldn't bother if she didn't have symptoms. She is 65. I hope that they get my dad tested as he has other issues (paralyzed from waist down). I'm convinced my sister has it. She has had anxiety problems and many other symptoms that are consistent with celiac. But she just lost her job and has no insurance. She is sort of trying a gluten free diet, but without a diagnosis I don't think she will be as strict with it.

[T.H.]

My mom asked her doctor and he told her at her age he wouldn't bother if she didn't have symptoms. She is 65.

I am so, so sorry your mom's doctor is such an ignorant prat. Is she willing to push him? Because at her age, it's even more crucial to be tested, actually. If you have celiac disease, the immune system is so overwhelmed with attacking itself that it doesn't have the resources to fight off illness like it should, AND the nutritional deficiencies don't give it as many resources to draw from, anyway.

So celiacs who are undiagnosed are more likely to develop complications to any illness they contract, such as developing pneumonia from a case of the flu. My own personal issue with this was pretty dang bad. In my thirties I contracted a disease (Valley Fever) that usually results in a couple months of coughing, except in immuno-compromised individuals like myself, it can escape the lungs and attack anywhere in the body. I was practically bedridden from it attacking the muscles in my legs, for nearly a year. It finally went dormant, but it well never leave and can come back at any time.

For someone your mother's age, they are already in a higher risk category for this sort of thing anyway. Having celiac disease makes it much, much more likely that there will be severe or even deadly results from illnesses. Her doctor is endangering her health, and... sorry, I should not say the words I'm thinking. It just makes me SO angry when doctors make decisions that are so detrimental to a patient's health and can literally result in early mortality, just because they haven't bothered to actually LEARN about something.

They shouldn't give an opinion if they don't KNOW anything. Just...grrrr.

shauna

[maximoo]

I would definitely get all kids tested--it just a quick blood test as you know. as far as your older boy, if celiac keeps him out of the military you should thanks your lucky stars. 1) an adhd kid shouldn't be allowed in the military in my opinion--due to the poor listening skills, & impulsiveness which is usually accompanied by lack of common sense. @) with the war it is possible he will be killed or severely injured & the gov't will let him rot if he comes home injured(missing limb,eye, ptsd, etc. )My 16 yo has high antibodies & we will get a drs note soon. I am thankful he can't be drafted (i draft came back)

Explore other careers with him.

Good Luck!

[ravenwoodglass]

as far as your older boy, if celiac keeps him out of the military you should thanks your lucky stars. 1) an adhd kid shouldn't be allowed in the military in my opinion--due to the poor listening skills, & impulsiveness which is usually accompanied by lack of common sense. @) with the war it is possible he will be killed or severely injured & the gov't will let him rot if he comes home injured(missing limb,eye, ptsd, etc. )My 16 yo has high antibodies & we will get a drs note soon. I am thankful he can't be drafted (i draft came back)

Explore other careers with him.

Good Luck!

As someone who had an undiagnosed celiac who joined the military I have to second this. Do not let him hide the ADHD either and it combined with his troubles in school may disqualify him anyway. If he is not college material there are plenty of other good paying occupations. Many high schools have vocational programs for everything from mechanics to plumbing to carpentry to medical technology. There are a lot of good trades he can go into.

In addition if he does go gluten free that ADHD may improve on the diet making it easier for him to do any trade he wants.