How Long Do I Gluten My Daughter B/f I Try To Get Her Tested?

[tri-gal]

Please help me decide when to test my daughter. I am struggling with the decision, in that she never went completely off gluten but went gluten light for 10 months. Do I really need to put her through 6 weeks full on gluten or is 3 sufficient since she never completely stopped.  I am anxious I'm destroying her development.

 

family context: I am an undiagnosed, but pretty certain I have celiac disease. gluten-free diet for past 11 months.

My 1 yr old son has gluten enteropathy and is gluten-free.

 

My nearly 6 year old daughter has potential symptoms of celiac:  episodes of pale, loose, fatty stools when eating more gluten; more bloating when eating more gluten, vague but occasional on off complaints of passing abdominal pain, but brief; she seemed to grow taller (finally)when she went gluten light, she has concave shape to her front two teeth, and grooves on enamel, itchy skin, bad breath, irritable and mood swings, seemingly far worse on gluten, seems to get pins and needles a lot.

 

Problem is: She has been gluten light over past 10 months due to my issues. Her symptoms improved, but again, it is hard to quantify. Now, I am becoming anxious she has celiac disease and I am damaging her life by feeding her gluten.

 

But, I want a proper dx for her and so I need to be sure I give her gluten for enough weeks to not get false negative. How long is enough without compromising her long term health. she never went completely gluten-free but certainly not gluten every day. Past three weeks, we've made a point of giving her bread. But she is way more emotional and has fits (whereas she is a very calm individual normally).

 

How long should we do this for to get the best chance of accurate DX without going so long that we permanently damage her teeth to come or cause some other issues?

Please give me your opinions! Much appreciated!!

 thank you.

[greenbeanie]

That's a tough one. I don't know how much this will help, but my daughter was gluten light pretty much her whole life (because of my own eating habits) until she was tested just after she turned four, and she had all positive blood tests and a positive biopsy. I did make sure she had some gluten every day for a month before the blood tests, but it wasn't much - usually a couple of crackers or a small bowl of cereal with wheat. I also had dozens of celiac symptoms from the time I was a child, and I'd been gluten light for about 15 years before testing, then briefly totally gluten free, then did a six-week gluten challenge eating about 1 slice of bread per day (which was miserable and all I could handle). My tests were squarely negative, much to my surprise and also my GI's. We both felt sure I had it, especially after my daughter was diagnosed. I'm still not entirely sure if my tests were false negatives or not.

If your daughter is not doing well with the increased gluten, and you have a receptive doctor, I'd request the full panel of blood tests sooner rather than later. If the results are negative now, you may not be sure whether it's a false negative - but if it's positive, you'd be able to proceed with a biopsy (or whatever the doctor needs for a firm diagnosis) before drawing things out too much longer.

Whatever you decide to do, I hope she feels better soon!

[tri-gal]

Thank you very much for your reply, greenbeanie. that was very helpful for me to learn about your experience. I think we can manage another week or two on gluten. Probably worth it so I can accept the results if they are neg. not that I want it pos, but there is always the doubt factor if we don't allow the proper time on gluten. hope your daughter is doing well.

[nvsmom]

Most doctors want the patient (adult) eating about two slices of bread per day for 2-3 months for accurate blood tests. The endoscopy only requires 2-4 weeks of gluten. If possible, go as long as you can. If it is too short, it could give a false negative. And make sue you have the DGP and tTG tests done, many docs only do the tTG tests.

Keep in mind that the tests could be negative even if she has celiac disease. I have celiac disease, and two of my kids had symptoms but they all tested negative. I made them gluten-free anyways and their health improved. It is possible that they have NCGI but with a parent with celiac disease, I doubt that is the problem. Perhaps have her go ffully gluten-free after testing and see if it helps.

Best wishes

[tri-gal]

Thank you for the info and advice on timing! I have now booked an appointment to raise the issue with her ped doc today. I decided at least to move forward with a conversation as she had another couple of episodes of steatorrhea, alternating with const days. Then a day of feeling nauseated and not wanting to go to school (not her at all). Could be something else, of course... 

I really hope I can get a panel or a referral.

I think I'd have an extremely hard time getting her fully gluten free if there is no diagnosis and since her potential symptoms are on and off and difficult to attribute with certainty. She is definitely at the age where she wants certain foods etc. and I'd find it psychologically hard to insist on 100% change in all social environments if it is not celiac disease.

I guess my first challenge: persuade doc to assess her.

I really wish I had my own Dx in my pocket so I could walk in with confidence. I hope I don't get shoed away.

thanks again.

[Roda]

Both my kids were eating gluten free meals at home but still ate plenty of gluten snacks and food outside of the home.  Both tested negative on blood work after my diagnosis(age 3/7).  Two years later my youngest still was having issues so had him tested again and blood test positive(age 5).  We opted out of a biopsy since I had a solid diagnosis and his blood work was positive.  Oldest son still had symptoms I was concerned about so he was tested every year and still had negative blood work.  2.5 years ago I had him scoped in the thought maybe he had false negative blood work.  His biopsy was normal also.  I had already decided to trial gluten free diet for him regardless since he had a lot of issues.  The results were amazing.  He is much happier and healthier and he decided to stick with it on his own.  So I guess he is considered non celiac gluten intolerant. 

 

Since you are pursuing testing follow it through.  That way you know you did all you could testing wise before you trial the diet. 

[tri-gal]

thanks for sharing your experience, that's really good context.  I must say I'm quite impressed that your 13 year old has decided to stay gluten free based on improvements; sounds like a mature fellow because there must be a lot of peer influence and opportunity to take the other path. Wow.

 

So, my update is that we saw the pediatrician yesterday. She agreed that a blood screen sounded reasonable

So doc said she would do tTG (but she wrote it down wrong as TGA, so I hope it gets sorted by the lab staff.  I pushed for DGP by pointing to a report, so she marked that down for IgG DGP, but I ran out of seconds to pursue  DGP IgA.  I checked the lab website and it is available. Any views from people on whether I should really pursue the IgA DGP or just be happy with tTG and DGP IgG.

Oh, I also found that the sensitivity reported for our lab's DGP IgA is 65%, so not so stellar. For IgG it was 75 to 85%. I guess all labs are different that way. Maybe this could explain my own results...not that the medical practitioners seem to read the fine print or even have ready  access to it?. grrr.

 

she checked her references and suggested 8 to 12 week on gluten, so I guess we'll keep going for another month or perhaps 6 more weeks of gluten bagels etc. I remain slightly paranoid that I am killing my daughter's teeth and stunting her development, but I suppose it is better to go the full trial.  It makes me sad to hurt my babies.

 

Views on doing the IgA DGP or sufficient with the tTG and IgG ?

thank you for your kindness in taking the time to reply everyone!!!!

[Roda]

Yes my oldest sometimes has insight well beyond his years.  There is a girl in his class that he is crushing on and he recently found out she is gluten intolerant too.  I thought it was cute, so I said to him that they could go on a gluten free date.    He wasn't amused. 

 

IMHO if I was going to go through all the trouble to do a gluten challenge, I would ask for the whole celiac panel to include:  total IgA, IgA tTg, IgA/IgG DPG.  The labs that we have used in the past few years have changed to doing the DPG instead of the older tests.  Hopefully you can get it straightened out and I  haven't left any test out.  It's been awhile since we have had to have any of those tests.