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Celiac Mom. Kids Positive, Regardless Of Negative Diagnosis?

Redeemed

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Redeemed Newbie
Redeemed
Posted

Help! I am going crazy over whether or not any of my children have Celiac. I suffered for years with gas, bloating, constipation, depression, and extreme fatigue before having a doctor tell me I had IBS. My celiac panel was negative. I did my own research and requested a biopsy from the same Gastroenterologist that diagnosed me with IBS. While wheeling me to the room where the biopsy was to be done, he literally told me he didn't think I had Celiac & all I needed to do was take some digestive enzymes! :o Weeks later, I received (by mail) news that I did, in fact, have Celiac.

That said, I am extremely confused about my serology results and how that affects my children and their discovery of whether or not they have Celiac. My son is 14, extremely thin (but very tall)....has been to my gluten-free nutritionist to try to get tips on gaining weight. He has always had pale skin....very moody/irritable...but has NO digestive issues---well, I take that back. He has had reflux off an on since he was born. I was so concerned about this that I had him biopsied. He had negative blood tests. The biopsy was negative.

My daughter is 11. She saw an Occupational Therapist as a toddler for sensory integration issues. She has a compulsion for picking at places on her skin (bug bites, etc.). She has always done this and has scarring, as a result. She was diagnosed with OCD, social anxiety, and a very mild form of Asberger's. Her symptoms mimic mine, to some degree--constipation, bloating/gas...moodiness...low energy level. She has a huge white stain on one of her front teeth--the dentist has always told me it is probably from bruising or something. Hmmmmm... I also had her biopsied---with negative results...negative blood tests, too.

My other daughter is 10. She has always tended toward constipation, but doesn't seem to have other digestive issues. She is full of energy, EXTREMELY talkative, etc. Neither one of my daughters has pale skin. This daughter also has negative blood tests. I have NOT had her biopsied--she is the one I have the least suspicions with, of having Celiac.

How do I not drive myself CRAZY wondering whether or not they have Celiac? I have read that you could do a gluten challenge, to see, but know that that could affect later testing results. I am at a loss as to what to do, don't want to ignore this (and cause potential health problems for them), and am not sure how to proceed. Thanks!

'

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txplowgirl Enthusiast
txplowgirl
Posted

Since all of them have had the tests run I would reccomend taking them gluten free. Whether or not they have Celiac or or just gluten sensitive most if not all their symptoms will more than likely go away. The treatment is the same either way. Strict gluten free or try the Enterolab tests. It will not dx Celiac but will tell you if they are gluten sensitive.

Good luck.

Vicky

Redeemed Newbie
Redeemed
Posted
  • Author

Thanks, Vicky. I will check into the Enterolab tests. I forgot to mention that I did have them tested (genetically) for that HLQ gene (not sure if I am saying that correctly). All 3 are positive for one of those....I think DQ 2 gene--have the results filed away. All I know is, that is another piece to this mystifying puzzle. I appreciate your reply. Take care.

Rachel

melblondin Apprentice
melblondin
Posted

One thought is to have them all do the genetic testing. It wouldn't give them an official diagnosis, but it might help you know which kids to watch more closely and to have blood screens done on every couple years or so. My doctor and I think that I have celiac disease (couldn't be officially tested because I was already wheat free from a wheat allergy, but carry DQ 2.5 and have all the symptoms plus resolution once gluten-free) and one of my children has positive bloodwork. We're planning on doing genetics with the other 3 at some point down the road just so we can get a better idea of who to watch more closely. I did mine through Prometheus and thought they did a great job. Although, I think with having a 1st degree relative with a positive diagnosis, they're supposed to get screened every few years anyway. Good luck and welcome aboard!

Gardening Apprentice
Gardening
Posted

For your daughter who has Asperger's - consider reading the book Special Needs Kids Eat Right by Judy Converse. Many kids on the spectrum (and kids with sensory processing issues too) benefit from a gluten-free casein-free diet. Many also have vitamin deficiences. This is separate and apart from whether they have celiac. So it is possible that your daughter is not celiac, but still reacts negatively to gluten.

T.H. Community Regular
T.H.
Posted

I approached it this way: the kids have my (the celiac's) genes. That means they might have the genes that could lead to celiacs. Which means that even if they don't have active celiac now, it could trigger at any time, where they would be getting damage potentially without knowing it, for years, just like I did. So I don't have to KNOW if they have celiac disease. I just need to be aware that this disease can trigger, so I thought: what is the safest diet for them, that being the case?

I tested them both at first, like you did. Had one positive and one negative result. I took them both gluten free, and both have improved. The one who was negative I am planning to get a genetic test done on to help him have more information about his own body, and then when they hit 18, the kids can decide for themselves how they want to do the diet, or not. While they are kids, I figure the gluten free diet is a safer one for them, and it sure as heck isn't harming them physically, you know?

Whereas the gluten diet just might be.

I know it's gotta be on me how cautious to be, and sometimes that's been hard to make others take it seriously, but it has made an improvement in both health and mood in both my kids, so I'm a big believer in trusting what I'm seeing over what the tests are not seeing, if that makes sense? I never want them to go through the crud I went through, I figure.

I wish you good luck!

Redeemed Newbie
Redeemed
Posted
  • Author

One thought is to have them all do the genetic testing. It wouldn't give them an official diagnosis, but it might help you know which kids to watch more closely and to have blood screens done on every couple years or so. My doctor and I think that I have celiac disease (couldn't be officially tested because I was already wheat free from a wheat allergy, but carry DQ 2.5 and have all the symptoms plus resolution once gluten-free) and one of my children has positive bloodwork. We're planning on doing genetics with the other 3 at some point down the road just so we can get a better idea of who to watch more closely. I did mine through Prometheus and thought they did a great job. Although, I think with having a 1st degree relative with a positive diagnosis, they're supposed to get screened every few years anyway. Good luck and welcome aboard!

Thanks. I DID have them genetically tested. I forgot to mention that, but (in a reply to someone else) added that information, later. They all tested positive for the DQ2 gene. I am not positive I am saying that correctly, but they were all positive for one of those genes--making the potential for Celiac in their lifetime a reality. They are getting blood work done every couple of years. Knowing that mine was negative, however, makes me uneasy about that.

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Redeemed Newbie
Redeemed
Posted
  • Author

For your daughter who has Asperger's - consider reading the book Special Needs Kids Eat Right by Judy Converse. Many kids on the spectrum (and kids with sensory processing issues too) benefit from a gluten-free casein-free diet. Many also have vitamin deficiences. This is separate and apart from whether they have celiac. So it is possible that your daughter is not celiac, but still reacts negatively to gluten.

Thanks! I will check out this book. I have heard this, as well.

Redeemed Newbie
Redeemed
Posted
  • Author

I approached it this way: the kids have my (the celiac's) genes. That means they might have the genes that could lead to celiacs. Which means that even if they don't have active celiac now, it could trigger at any time, where they would be getting damage potentially without knowing it, for years, just like I did. So I don't have to KNOW if they have celiac disease. I just need to be aware that this disease can trigger, so I thought: what is the safest diet for them, that being the case?

I tested them both at first, like you did. Had one positive and one negative result. I took them both gluten free, and both have improved. The one who was negative I am planning to get a genetic test done on to help him have more information about his own body, and then when they hit 18, the kids can decide for themselves how they want to do the diet, or not. While they are kids, I figure the gluten free diet is a safer one for them, and it sure as heck isn't harming them physically, you know?

Whereas the gluten diet just might be.

I know it's gotta be on me how cautious to be, and sometimes that's been hard to make others take it seriously, but it has made an improvement in both health and mood in both my kids, so I'm a big believer in trusting what I'm seeing over what the tests are not seeing, if that makes sense? I never want them to go through the crud I went through, I figure.

I wish you good luck!

Thank you for your reply. Trust me, I am SO close to just having the whole family go gluten free! It would make life so much easier, in many respects. However, after reading Dr. Green's book (and other medical literature), it seems like the concensus is to refrain from any gluten trials. They say that it could affect future testing. I know what you mean, though. I will just have to make a decision. I appreciate your response. Take care.

nora-n Rookie
nora-n
Posted

re. autism spectrum including asbergers, there is also a different mechanism by which gluten affects them.

It is tiny particles of gliadin that work like morphine in their brain.

This has nothing to do with celiac and celaic tests do not work to detect those gliadin fragments.

Google reichelt gliadin.

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