Biopsy for my 3 year old Friday

[Sarahcatherine]

My little guy has had terrible stomach trouble for about a month. The pediatrician ran a celiac panel among other things and sort of surprising to all of us it can back strongly positive today. Deamidated Gliadin IgG was 124 and all the others were just as high. So the GI doctor got us in for endoscopy right away as he thinks it is nearly certain my son has celiac and they don't want to make him keep eating gluten to wait for a GI appointment. My question is regarding how necessary it is to have all family members tested regardless of symptoms. Is this still current recommendation? Also any tips on helping a 3 year cope and learn to make proper food choices would be great. We are sad that this is what is going on but happy that there is a solution to his tummy trouble.

[TexasJen]

1 hour ago, Sarahcatherine said:

My little guy has had terrible stomach trouble for about a month. The pediatrician ran a celiac panel among other things and sort of surprising to all of us it can back strongly positive today. Deamidated Gliadin IgG was 124 and all the others were just as high. So the GI doctor got us in for endoscopy right away as he thinks it is nearly certain my son has celiac and they don't want to make him keep eating gluten to wait for a GI appointment. My question is regarding how necessary it is to have all family members tested regardless of symptoms. Is this still current recommendation? Also any tips on helping a 3 year cope and learn to make proper food choices would be great. We are sad that this is what is going on but happy that there is a solution to his tummy trouble.

I'm so sorry. This must be very hard for you and your family.

The guidelines for which family members to test and how often are a work in progress.  Currently, I believe the guidelines state to test all first degree relatives every 2-3 years or if they ever develop ANY suspicious symptoms. (Remember 50% of people with celiac don't have GI symptoms so it can go undiagnosed for years).  

For example, when I was diagnosed 10 months ago, there were just vague guidelines to test first degree relatives.  Our pediatrician emailed a well - respected gastroenterologist who basically told us there were no specific guidelines.  Now the guidelines are more specific, but I suspect that will be modified in the next 5 years as people learn more about celiac. I  had both my kids tested last year shortly after my diagnosis. My sister tested negative, but as far as I know, my parents have refused to get tested. Oi!

One thing to note is that you can't ever develop celiac if you don't carry one of the genes DQ2 or DQ8. So, in retrospect, I realized that I should have had my kids get both a routine celiac panel and the genetic testing. That way, if they are DQ2 and 8 negative, they never have to be tested again!.  In 3 years when they get retested, I'm doing both.

As for teaching your son, teaching our kids to eat healthy is one of our toughest jobs as parents and now yours is twice as hard.  I would think about making your entire household gluten free, especially if you have other kids. Kids are messy and not great at self control. The ones that can eat gluten will probably leave crumbs every where. And, the one with celiac will have less temptation if it's not around - Sometimes my kids go into the pantry to grab a snack. If there's real crackers or cookies in there, your celiac kid may not realize and eat it accidentally.  The non-celiac relatives will get plenty of gluten at other places - work, school, parties, etc. 

As for specific, day-to-day stuff, I would reach out here as well as at allergy websites. Severe peanut and dairy allergies have a lot of issues in common with us celiacs regarding safe eating outside the house, restaurants, cc etc.

Good luck!

[Jmg]

Welcome

3 hours ago, Sarahcatherine said:

My question is regarding how necessary it is to have all family members tested regardless of symptoms. Is this still current recommendation?

Just to add to Jen's excellent post above, there is research ongoing as to what causes celiac but the genetic component means that either you or your partner or both and yours or theirs or both your respective family may have the potential to develop it, or, crucially, could already have it but not connect their experience with it.

Take a look at this overview of how it could present:

Open Original Shared Link

This list is far more extensive:

Open Original Shared Link

I don't know how strong the evidence is for all the claims in the second list, but the underlying theme, that celiac or gluten sensitivity can affect the body in a myriad different ways is undoubtedly true. Check out Mountain Man:

Open Original Shared Link

One takeaway is that tummy troubles actually make up a minority of symptoms, many won't suffer them at all. So you have a family member with a genetic condition that could manifest in multiple ways in other family members. It could be an older relative's rheumatoid arthritis, depression, skin rash or back pain is in fact caused by gluten.

My suggestion would be to consider testing for any direct family members, certainly before you go gluten free in the house should you choose to do so. If negative, don't rule out gluten becoming an issue later in life. Something to watch for. 

For other family members who may never have considered the possibility that this could be a problem for them, just let them know what you've learned. Don't alienate them but do let them know it's genetic, so they may carry the gene, it presents in many different ways, or indeed silently, and if untreated consequences become increasingly serious. Make sure to stress that anyone who thinks they may have an issue SHOULD NOT GIVE UP GLUTEN as this would throw the testing process into doubt. If they choose not to test or finish and testing is negative they still have the option of trialling the gluten-free diet. 

Read up on this site and elsewhere eg: Open Original Shared Link and find more good advice and links here:

Best of luck to you and the little guy. It may not feel this way but identifying this at such an early stage is a massive win for you both and you and your doctor's vigilance have paid off in a big way!

 

 

[frieze]

you DO NOT need one of those two genes.  there is a small but real group that do not have them, and ARE celiacs.  Europe recognizes DQ9, and others, besides the DQ8 and DQ2

[cyclinglady]

9 hours ago, TexasJen said:

 

One thing to note is that you can't ever develop celiac if you don't carry one of the genes DQ2 or DQ8. So, in retrospect, I realized that I should have had my kids get both a routine celiac panel and the genetic testing. That way, if they are DQ2 and 8 negative, they never have to be tested again!.  In 3 years when they get retested, I'm doing both.

 

I thought about getting the genetic testing for my kid so she would not have to go through antibodies testing every few years or so (sooner, if symptoms present), but someone on this board reminded me of our healthcare system.  So, we know that 30% of the population carries the gene that could develop into celiac disease.  But the health insurance industry, just might frown on insuring a person who has the potential to develop it.  We are self-employed.  Just a few short years ago, I was (uninsurable) because of Hashimoto's, a finger infection (do not swim with a cut), and Rosacea that resolved without systemic medications.  My doctor even wrote a letter telling the insurance companies that I was a triathalete!  But no matter.  I was told I could take systemic medications that could damage my liver even though I never did take them.  We are talking big health insurance companies here!  

Not to be a fear monger, but who knows what will happen with our healthcare situation in the US?  Some non-medical person may interpret a genetic test as having celiac disease.  DENIED! Her own doctor has witnessed her Raynaud's, but He did not put it in her chart.  There is no cure for it.  Why get a label?   (He is the kind of doctor who asks what your expectations are for the visit which is so rare and he is runs the entire very large practice, so I am sure he knows the insurance company drill).  

 I will test my kid (antibodies) one more time before she turns 18.  She can decide to get the genetic testing on her own.  

[kareng]

I have Celiac.  Its in my medical record.  So I had the gene test.  That told me what I needed to know about my kids' chances of getting Celiac.  

[Gemini]

5 hours ago, cyclinglady said:

I thought about getting the genetic testing for my kid so she would not have to go through antibodies testing every few years or so (sooner, if symptoms present), but someone on this board reminded me of our healthcare system.  So, we know that 30% of the population carries the gene that could develop into celiac disease.  But the health insurance industry, just might frown on insuring a person who has the potential to develop it.  We are self-employed.  Just a few short years ago, I was (uninsurable) because of Hashimoto's, a finger infection (do not swim with a cut), and Rosacea that resolved without systemic medications.  My doctor even wrote a letter telling the insurance companies that I was a triathalete!  But no matter.  I was told I could take systemic medications that could damage my liver even though I never did take them.  We are talking big health insurance companies here!  

Not to be a fear monger, but who knows what will happen with our healthcare situation in the US?  Some non-medical person may interpret a genetic test as having celiac disease.  DENIED! Her own doctor has witnessed her Raynaud's, but He did not put it in her chart.  There is no cure for it.  Why get a label?   (He is the kind of doctor who asks what your expectations are for the visit which is so rare and he is runs the entire very large practice, so I am sure he knows the insurance company drill).  

 I will test my kid (antibodies) one more time before she turns 18.  She can decide to get the genetic testing on her own.  

It is illegal in the States to discriminate against anyone with a pre-existing condition.  No health insurance company can do that.  That has been on the books since the ACA went into effect.  However, the bigger concern is what they can charge you if you are older with a pre-existing condition.  You are correct about not knowing how this will all play out because neither side is doing a very good job at the moment.    Isn't it bizarre that they would insure you if you took the medicine that might screw up your liver but they don't care if you really take care of yourself?  I have run into that problem shopping for long term care insurance. Bastards......

The best way to get around this whole problem is to pay out of pocket for gene testing.  It is not expensive.  That is what I did so the insurance company never saw the results. I also paid for my Celiac panel out of pocket also. It says Celiac in my medical record but there are no testing results to back it up. 

[pschwab]

We had almost the exact situation last April. My then two year old was having bad stomach issues, so our pediatrition ran all the tests. His ttg levels came back at 300. With such a high indicator of celiac, and the fact the gi couldn't run a biopsy for three months!, we immediately went gluten free and did genetic testing. The diet change showed an immediate change! When his genetic tests came back positive for celiac, he was able to get a definitive diagnosis for celiac. We chose to have our immediate family undergo the genetic testing as well so our other kids would know if they have to be on the lookout for celiac symptoms or not. Our 7 yr old and my husband have the gene, while my five year old and myself do not. So basically we are keeping an eye on the two and will redo the celiac panel every three years or so unless symptoms arise.  We are expecting another baby and plan to have her tested in the first 2-3 years of life. In my personal opinion, forewarned is better. We also immediately went completely gluten free in our home. As someone mentioned above, his age was a huge factor as well of the age of our other kids. They are just not careful enough even when they try. I've seen plenty of posts about adult households where celiac family members are accidentally glutened repeatedly and it's not worth it to us to put him at any sort of risk. The rest of our family continues to eat gluten outside of the house. Going out to eat has been interesting. We have found three restaurants within 30 minutes of our house that are celiac friendly. We rarely go out to eat anymore based on the inconvenience of it being farther away, but we still make a habit of it so the little one doesn't miss out. We have also tried to continue going to places like McDonalds so he doesn't miss out on the play place experience he so loves. His siblings eat McDonald's food and we pack him a celiac safe meal, and I freak out wiping down the whole area and his hands as he touches way too much for my comfort level.  We are lucky to have a very cooperative "celiac kid" who understands all these things, and his siblings are very careful when they consume gluten. One of our new favorite books is "The Celiac Kid". We can discuss how special our little guy is but also how he's no different from anyone else if we are careful. I'm sure many people will think we have gone overboard with how cautious we are, but when he's in these huge years of growth and development there is no way we'd risk any cross contamination. Sorry this is so long! The transition will be a bit overwhelming at first, but you'll be surprised how easy it all is after a couple months. Keep in mind school/day care will present its own challenges. Good luck!!