Skepticism From Family

[Janniec6]

My 12 year old son is newly diagnosed~he doesn't even know yet. Our doctor wants to talk to my son first, so Monday we have an appointment. I've been reading everything that I can get my hands on, cleaning out cupboards, checking out local stores etc. I just spoke with my father-in-law who is a retired pharmacist~he told me that celiac disease is something that is diagnosed at a much earlier age. He doesn't believe that its possible for that to be what is truly going on with our son. I'm angry right now~but worse I'm doubting myself and our physician. I'm in the process of emptying the cupboards of food that has gluten, and I'm wondering, should I be getting rid of all this stuff? My son has only had the blood work, not a biopsy. My physician, who I trust, tells me that my sons antibodies were off the charts, he also shows multiple vitamin and mineral deficiencies. The symptoms that we have been dealing with are: headaches, anxiety, stomachaches, insomnia, ADHD, mood swings, constant grazing. I need to hear a rational presence right now.

[Emily Elizabeth]

I was just diagnosed at 26, so I think it can come on at anytime. I would ask the doctor for a biopsy though since that is the gold standard for diagnosis. This is a lifelong commitment and you don't want to make your son change his diet for life if it is not necessary. The book I read that was very helpful was "Celiac Disease: A Hidden Epidemic" here is a link - Open Original Shared Link. The symptoms do sound like celiac disease though. I would continue cleaning out the kitchen and preparing for the diagnosis to be correct. You will want to continue to feed him gluten until the biopsy though to ensure that he doesn't produce a false negative. Good luck!

Emily

My 12 year old son is newly diagnosed~he doesn't even know yet. Our doctor wants to talk to my son first, so Monday we have an appointment. I've been reading everything that I can get my hands on, cleaning out cupboards, checking out local stores etc. I just spoke with my father-in-law who is a retired pharmacist~he told me that celiac disease is something that is diagnosed at a much earlier age. He doesn't believe that its possible for that to be what is truly going on with our son. I'm angry right now~but worse I'm doubting myself and our physician. I'm in the process of emptying the cupboards of food that has gluten, and I'm wondering, should I be getting rid of all this stuff? My son has only had the blood work, not a biopsy. My physician, who I trust, tells me that my sons antibodies were off the charts, he also shows multiple vitamin and mineral deficiencies. The symptoms that we have been dealing with are: headaches, anxiety, stomachaches, insomnia, ADHD, mood swings, constant grazing. I need to hear a rational presence right now.

[lovegrov]

Considering the blood tests and his symptoms, he's got it. Don't doubt your doctor. Get the biopsy if it'll help prove it to you. There's no question whatsoever that celiac can be triggered at any age. Mine happened at 44. My father was diagnosed at 70.

richard

[Guest Doll]

I was diagnosed at 23 (my Celiac was triggered around age 21). Contrary to popular belief, Celiac can become develop at *any* age.

Many retired old-school pharmacists, doctors, nurses, etc. were taught that it is a "children's disease", and that you can grow out of it. Neither is true.

If your son was tested for TTg and EMA, this is very accurate. EMA picks up almost 100% of active Celiac cases and is specific for Celiac. If he has other symptoms suggesting Celiac, I would trust this doctor. My bloodwork was also off the charts, and based on my severe symptoms, I was dx'd with bloodwork alone. I did request a biopsy, but I would not put your son through that if he already has a dx, unless your doctor wants to check for other problems.

[nmw]

Positive bloodwork can be enough of a diagnosis - if you want it to be. Meaning that you don't have to get the biopsy unless you want to be darn sure. Even then, doctors often do not take enough samples and come back with a negative diagnosis. Heck, there are tons of people out here who don't have a diagnosis, but have found a new and healthy life living gluten-free. (that's me - going gluten-free at age 41).

Keep reading and cleaning - and then make sure your son's doctor knows enough about celiac disease. If you have any doubts, seek out your local CSA chapter (or post here or on other celiac disease forums) and find a doc who knows what he/she is dealing with. You can also enlighten your doctor with information you find on your own.

celiac disease - it's not just babies with chronic diarrhea anymore!

As far as famly skepticism, welcome to another lovely fact of gluten-free life. Many families are in denial, since it's a genetic disease and no one wants to give up "regular food".

Good luck, and keep doing right by your boy.

[Kibbie]

I just spoke with my father-in-law who is a retired pharmacist~he told me that celiac disease is something that is diagnosed at a much earlier age. He doesn't believe that its possible for that to be what is truly going on with our son.

My grandfather was diagnosed at 87 years old. He decided to be tested about 6 months after my daughter was diagnosed because he was experiencing some strange stomach things.

His Dr. told him that he would run the blood work but let him know that it wouldn't be Celiac disease because he was "too old" to get it. THEN when the blood work came back positive his Dr. told him "Its only a slight positive so it may not be Celiac Disease"

with my urging he saw another Dr. had a biopsy and low and behold he has Biopsy Confirmed Celiac Disease! He had an Endoscopy about 10 years before and they compared the two photos.... he CLEARLY did NOT have Celiac disease back then.

So I understand why your father-in-law is skeptical... even my grandpa's Dr. was.... but My grandpa is living proof that Celiac Disease can show up at ANY time in your life!

(btw he also decided to be tested for the genes because the Dr. offered that test too... they were positive for both Celiac Genes)

[Jestgar]

Whatever you do, don't doubt yourself. You're his mom and you know him better than any doctor.

[Guest micah]

It isn't just celiac disease that causes this reaction in people. Unfortunately anything that causes you to have to do things differently seems to be an unwelcome to people.... These things flush out those who are kind and those who are not. At this point of change in my life, when I got sick, it took me years to realize that I had to stand firm on what was true for me. It isn't easy to have to go against the "sincere objections" of others, but it is absolutely necessary in order to find healing. Follow your instincts.

I've had to learn to let them object, let them choose to be offended, and even let them exclude themselves from my life or me from theirs if that is what it takes to be true to my own healing. It's lonely, but if I let those objectors influence me, they never really hang around to pick me up off the floor and sit with me when I'm so sick I can't take care of myself. So, they don't care that much, they just have to stick their nose in.

Micah

[Electra375]

Danna Korn - Kids with Celiac Disease is an awesome place to start.

I would hold off going gluten-free until you decide whether or not you are going to biopsy. Biopsy is the gold standard and it's positive result is with out question the firm dx.

[Janniec6]

Thank you for all the encouragement!

I'm confused about something~I've done quite a bit of reading in the past week. I'm reading info regarding the accuracy of the new blood tests available. If I understand correctly, the new blood tests are extremely accurate, and there are no guarantees with the biopsy. I've read that is some of the posts today~

My physician with current blood work results is saying celiac and gluten free diet.

At some point with new advances the gold standard does change.

I'm very new to this, so please understand especially when it comes to my kids, I question EVERYTHING!

Thanks~

Jan

[Karen B.]

It isn't just celiac disease that causes this reaction in people. Unfortunately anything that causes you to have to do things differently seems to be an unwelcome to people.... These things flush out those who are kind and those who are not. At this point of change in my life, when I got sick, it took me years to realize that I had to stand firm on what was true for me. It isn't easy to have to go against the "sincere objections" of others, but it is absolutely necessary in order to find healing. Follow your instincts.

I've had to learn to let them object, let them choose to be offended, and even let them exclude themselves from my life or me from theirs if that is what it takes to be true to my own healing. It's lonely, but if I let those objectors influence me, they never really hang around to pick me up off the floor and sit with me when I'm so sick I can't take care of myself. So, they don't care that much, they just have to stick their nose in.

Micah

Couldn't have said it better myself! My sister nicknamed me "Canary" because I was the first one diagnosed (canary in the mine) and spent a year with it being "my problem" until my Mom was diagnosed and then my sis started having so many problems with healing from a surgery until she went gluten-free.

[JennyC]

Thank you for all the encouragement!

I'm confused about something~I've done quite a bit of reading in the past week. I'm reading info regarding the accuracy of the new blood tests available. If I understand correctly, the new blood tests are extremely accurate, and there are no guarantees with the biopsy. I've read that is some of the posts today~

My physician with current blood work results is saying celiac and gluten free diet.

At some point with new advances the gold standard does change.

I'm very new to this, so please understand especially when it comes to my kids, I question EVERYTHING!

Thanks~

Jan

The blood test used most frequently now is the Ttg. There are not false positives, but it is possible that there are false negatives. The biopsy is still the "gold standard" to most doctors, but that is slowly changing as blood tests are getting more accurate. There are many studies that show that blood work and dietary response are enough to diagnose celiac disease. That's what my son's pediatrician thought and she had me start him on the gluten free diet immediately. When I made it to the pediatric gastroenterologist one month later he refused to treat him without a biopsy. I could not bear to give my son gluten again, so we did not do the biopsy. Things would have been different if he would not have started the gluten free diet so early, but I feel confident in my decision. If you desire a universally accepted diagnosis, then go for the biopsy. You should do what is best for your family, and at your son's age maybe you should consider getting him involved in the decision. It is his body and he will have to deal with this disease for the rest of his life. Remember that if your family decides against the biopsy now, you can always do it at another time.

[GeoffCJ]

Thank you for all the encouragement!

I'm confused about something~I've done quite a bit of reading in the past week. I'm reading info regarding the accuracy of the new blood tests available. If I understand correctly, the new blood tests are extremely accurate, and there are no guarantees with the biopsy. I've read that is some of the posts today~

My physician with current blood work results is saying celiac and gluten free diet.

At some point with new advances the gold standard does change.

I'm very new to this, so please understand especially when it comes to my kids, I question EVERYTHING!

Thanks~

Jan

My understanding - The blood test does not always pick up Celiac disease, that is there are a good number of false negatives. But it is accurate with a positive, that is that if it says you DO have it, your most likely do. but if it says you DON'T, well, the jury is still out.

I was negative on the blood test, but positive dietary reaction, positive endoscopy, positive Enterolab fecal testing.

And i was 31 when diagnosed. Had had symptoms since I was 18-19

Geoff

[Guest micah]

Couldn't have said it better myself! My sister nicknamed me "Canary" because I was the first one diagnosed (canary in the mine) and spent a year with it being "my problem" until my Mom was diagnosed and then my sis started having so many problems with healing from a surgery until she went gluten-free.

Wow, how wonderful you finally were validated! Yay!

[gfpaperdoll]

Jan, your son has a positive diagnosis, he does not NEED a biopsy, he does need to be gluten free & it sounds like you are finding out about that.

I personally do not think that a biopsy is needed (unless you want one) because if you have a positive blood test that is good enough. I also totally support Dr Fine & Enterolab.com & the information & work that they are doing. I think their gene test is a Godsend because they also test for the gluten intolerant genes, which is being missed by the other labs and a cause of people being given incorrect information. I also am of the mind that it is better to stay as far away from hospitals as possible because they have all those "super bugs" there & here in the US they do not report the number of patients that have contacted other problems from being hospitalized...

Really the "GOLD STANDARD" is a positive dietary response. I think that anyone that wants to keep eating gluten until their guts are damaged to "prove" they are ill, is really not a good thing. Plus there are no guarantees on a biobsy they might not take enough samples & miss the damaged areas, so you get a lot of false negatives.

If you have insurance the docs are always willing to do tests...

Some of the books I Like: Living Free for Dummies, Celiac Disease A Hidden Epidemic by Peter H Green M.D., Dangerous Grains by James Braly M.D. & Ron Hoggan M.A., Eat Right for your Blood Type by Dr. Peter J D'Adamo (not gluten free but insightful), & Super Foods by Steve Pratt M.D. (also not gluten-free but good info on nutrition).

Check into giving your son a B12 everyday. Join your local support Group. eat whole foods at first & wait to intro the gluten free grains etc. well, unless the kid's symptoms are all gone & he is bouncing around like he has a new body Good Luck & moms are always right

[Janniec6]

Thank you!

thank you!

thank you!

thank you!

I feel safe and sane for the first time this week! I'm on the right track, I will figure this out~my son will take my lead and probably be relieved that we've finally got an answer. Had my youngest screened today~I can do this!

Jan

[Nic]

Hi, my son was diagnosed at 4 but my father and my aunt were both diagnosed at 50. So there is no age limit to being diagnosed. As far as the testing is concerned, my sons blood work was also off the charts. The GI doc was positive it was Celiac but still wanted to do the biopsy to confirm it. I was all for it because I was so upset about changing his diet that I wanted to be absolutely sure. We had the biopsy and it came up negative. The doctor was shocked because of his blood levels so he sent the same biopsy (he didn't go in for a new one) to Columbia University in NYC and they said it was positive. So one lab said negative and then a more experienced lab said positive. So had we listened to the first lab, he would be still eating gluten and being sick as he was then. But the blood on the other hand was right from the beginning.

Nicole

[Guest elysealec]

Just tell your father-in-law to do any current research. General consensus, years ago was that it was a childhood disease and it could be outgrown, neither of which are true. Celiac disease can be diagnosed at any age. I recently attended a conference and listened to Dr. Fasano of the Celiac Center in Baltimore and he said the up and coming age of diagnosis is in the early 20's with chronic anemia. Please listen to your doctor. I was diagnosed at 40, but had chronic anemia from college. My daughter was diagnosed at 7, but exhibited only mood symptoms, which I did not relate at the time. I had all of my children tested and she was the only one positive and she is the biggest on the growth curve. We are both biopsy confirmed.

My niece was just diagnosed at 9. Her only complaint was stomachache. The school thought she was crazy. Her mother, my sister-in-law insisted on the test and to the physician's surprise, she has celiac disease, biopsy confirmed at this point.

My point is this, celiac disease is often misunderstood.

Good luck.

Vicki

[sparkles]

I was diagnosed at 55! I would listen to the doc and be very grateful that you have a doctor who knows about celiac disease and how to read the results of the blood tests as well as test for all the vitamin and mineral deficiencies. No matter how much family members might think they know, unless they have celiac disease or live with someone who does, they really don't know a thing!!!!! I say this because even living with celiac disease, I am discovering new things about this disease even after 6 years of reading everything I can find on it! Good luck. Your son will feel so much better when he is gluten-free.... and if the whole house is gluten-free, it will make the transition for him that much easier. Even at my age, I sometimes find that I feel sorry for myself. There is a grieving time and a time of frustration as you try to explain your lifestyle changes to those around you. BUT in the long run, what is important is that your son feels better and is healthier!

[psawyer]

I was diagnosed at age 46. My doctor at the time (he retired 4 years ago) agreed to test for it when I asked about it, but said it was unlikely to be my problem since celiac "is a rare, childhood disease." Hmm.

[stef-the-kicking-cuty]

July 21st 2004, was the exact date I had my dx. This is exactly three years as of today. I was 27 back then and really, really sick. So, if it's not possible to diagnose celiac at a later age, then it's all in my head and I am crazy. But I am not. So one more living proof, like so many on here, that celiac can be diagnosed at any age and you will have it for life.

[Karen B.]

Have I mentioned that my Mom was 73 when she was diagnosed?

[melrobsings]

I think the true test will be putting him on the diet. Just stop doubting yourself, breath and eat gluten-free. If he gets better great, if not, try something else....easy peasy! (not really with gluten-free food but yall know what i mean)