Need advice from the GF experts...

[1GirlTwinBoys]

Here's a little background on the situation...  DH went GF 2 years ago after a - gluten blood test.  He was having horrible digestive issues, fatigue, joint aches and scalp issues.  His sister tested + for gluten issues with a blood test and has been GF for 3 years.  I knew of the common false negatives with these test and just put him on a 100% GF diet.  He was like a different person within 2 days and continued to improve.  If he or his sister gets one bite of gluten they are sick.  He literally feels like it takes 3 days to recover from the fatigue, joint aches etc..

 

My DD 13 has been having some issues lately with mild anxiety and depression.  This was all discussed with her Dr. at her last well checkup 3 weeks ago and he diagnosed her with mild anxiety.  She keeps telling me she doesn't want to feel like this with the worry and obsessive thoughts.  So, in the back of my mind I'm really wondering if she's gluten intolerant or possibly Celiac.  Her dad and aunt have not been officially diagnosed with Celiac though and neither would be willing to go back to eating gluten to have any official invasive testing done.

 

Anyway, I started my DD on a GF diet Saturday and I already see a REALLY big difference in how she feels and acts.  I'm just unsure if I'm doing the right thing.  Should I get official invasive testing if she's feeling better?  I know I'd have to put gluten back in her diet for it to be accurate.  My brother called me and was saying how you shouldn't put a child on a GF diet unless you have an official diagnosis because it will be hard for them to go back to eating gluten ever again.  

 

Thoughts?? I've just heard that the test are not accurate and really going on a GF diet is the only way to know for sure.  Don't want to waste time and money on something that isn't going to be clear.

 

 

ETA:  I told her not to use her regular shampoo because I noticed it contains wheat protein.  She said maybe that's why she has little bumps on her scalp.  That was another red flag because her dad gets scalp issues if he eats or uses products with gluten.  I had no idea she was experiencing that but have noticed her mildly itching her head and brought it to her attention last week.

 

Edited August 22, 2016 by 1GirlTwinBoys

[Monica_in_Switzerland]

A trial of several months is not going to effect her ability to digest gluten long term.  This is also long enough to let any "placebo effect" wear off.  

 

My son had a positive blood test and negative biopsy!  According to our Gastro doc, this NEVER happens.  Anyway, he told us to try with gluten and try without gluten, and see what worked.  On GF diet, ds's pain symptoms went away, as well as his nail-biting habit and near-constant anxiety.  I would say he is still a very slightly anxious child, but nothing like it was when he was dealing with gluten.  And in terms of abdominal pain, it's clear he needs a GF diet.  

 

If another one of my kids has gluten intolerance symptoms, I will not go for a biopsy.  I'll just run a trial, because it was extremely frustrating to go through all that just to confirm something that could be pretty easily confirmed through a gf diet trial.  

 

My mom finally tried a gf df diet after suffering from digestive issues her whole life, but never testing positive for anything.  She is like a whole new person.  

 

If your dd feels better without gluten, then she feels better without gluten.  Period.  What difference does it make if she is "officially" celiac?   

[Sara in AZ]

A trial of several months is not going to effect her ability to digest gluten long term. This is also long enough to let any "placebo effect" wear off.

 

My son had a positive blood test and negative biopsy! According to our Gastro doc, this NEVER happens. Anyway, he told us to try with gluten and try without gluten, and see what worked. On GF diet, ds's pain symptoms went away, as well as his nail-biting habit and near-constant anxiety. I would say he is still a very slightly anxious child, but nothing like it was when he was dealing with gluten. And in terms of abdominal pain, it's clear he needs a GF diet.

 

If another one of my kids has gluten intolerance symptoms, I will not go for a biopsy. I'll just run a trial, because it was extremely frustrating to go through all that just to confirm something that could be pretty easily confirmed through a gf diet trial.

 

My mom finally tried a gf df diet after suffering from digestive issues her whole life, but never testing positive for anything. She is like a whole new person.

 

If your dd feels better without gluten, then she feels better without gluten. Period. What difference does it make if she is "officially" celiac?

This is interesting! My DD tested positive for celiac this spring (both antibodies and biopsy), so we did bloodwork on all the kids. My son's bloodwork and back "weak positive", just about 2 or 3 points over the lower limit for antibodies. But his biopsy just came back negative.

 

Hmmmm. Maybe I'll try going fully GF with him anyway, and see if it helps his stomach issues. That should seem obvious to me, but I sometimes need the confirmation of an official diagnosis to make tough choices like that!

[Junie]

I  would get a biopsy ASAP and then immediately put her on a strict GF diet.

 

I have been gf for 7 years.  I wish I had gotten a biopsy first.  I have a diagnosed wheat allergy.  I don't know if I have Celiac, so it makes it harder to monitor my children.  Also, when people ask me if I have Celiac, I feel kind of stupid answering "I don't know".  It also makes me feel that people will not take my dietary needs seriously if I don't have An Official Diagnosis of Celiac.

 

OP, you're so early into this that I would absolutely get her tested.  If you are going to put her on a strict gf diet, which seems like the right choice, this is probably your only chance to get her tested.

[kandesmom]

Another option that is not invasive and very accurate is to do Nutritional Response Testing. Our Nutritional Therapy Practitioner helped us figure out the underlying problems our son was having. We thought he was sensitive to gluten, but it was more than just gluten. He is so much better since we started going to the NTP.

[1GirlTwinBoys]

If another one of my kids has gluten intolerance symptoms, I will not go for a biopsy.  I'll just run a trial, because it was extremely frustrating to go through all that just to confirm something that could be pretty easily confirmed through a gf diet trial.  

 

 

Yes, this is how I feel about it.  The outcome will be the same weather she's celiac or gluten intolerant.  There is no cure or treatment other than diet lifestyle change.  I do understand that if you're actually celiac you are doing intestinal damage any time a trace amount of gluten is consumed vs. just having an intolerance.  

[Crimson Wife]

There is a stool test that is supposed to detect celiac even after the person has gone GF. I've thought about getting it for my DD with gluten intolerance. She tested negative twice for celiac and wheat allergy (2nd time with the extended panel) but after we switched her to a GF diet at the end of 2011 she experienced a dramatic "catch up" height and weight gain. It is expensive and not covered by our insurance, however.

[gingersmom]

My daughter is gluten intolerant and went gluten free at suggestion of gastroenterologist.

 

It's been 9 headache and stomachache free months. Pure bliss.

[fraidycat]

I would get a biopsy ASAP and then immediately put her on a strict GF diet.

 

I have been gf for 7 years. I wish I had gotten a biopsy first. I have a diagnosed wheat allergy. I don't know if I have Celiac, so it makes it harder to monitor my children. Also, when people ask me if I have Celiac, I feel kind of stupid answering "I don't know". It also makes me feel that people will not take my dietary needs seriously if I don't have An Official Diagnosis of Celiac.

 

OP, you're so early into this that I would absolutely get her tested. If you are going to put her on a strict gf diet, which seems like the right choice, this is probably your only chance to get her tested.

Tell them either: my medical diagnoses are none of your business OR you have Non-Celiac Wheat Sensitivity and consuming wheat triggers a systemic immune response in your body. No need to feel stupid. :grouphug:

 

 

https://www.sciencedaily.com/releases/2016/07/160726123632.htm

[kbutton]

I always tell people to at least try the blood tests if you are set against biopsy. Then, do the trial. At least you have a ballpark idea of what is wrong if you get a positive on the test--it strengthens your cause, so to speak. If you get a negative or a positive, but have a dramatic response to the change in diet, you'll still want to be GF, and it doesn't matter why. It does mean you ought to stay on top of other possibilities though--my food intolerances continue to rise, and other than possible histamine tolerance issues, there aren't good explanations--I have no true food allergies. I discovered that GF helped me by accident, so I never did the testing. The results were too dramatic to even consider eating gluten just to know for sure.

 

Yes, a blood test can be a false negative, but false positives are odd. Also, it's my understanding that some parts of the test are added to make the test more sensitive, so how likely it is to be a false result depends on which parts of the test "lit up" or did not light up, so to speak. (I think one part so rarely lights up for celiac that they added the others, BUT, if it does light up for that specific test, it's very unlikely to be anything other than celiac. I believe the proper term is that the test is not sensitive, but it is specific. 

Other parts of the blood panel are sensitive, but they could be triggered by positive by a range of issues, not just celiac. You can peruse the celiac sites to see if this understanding is correct (or still correct--I think they discover more things all the time). 

 

I would not make this child eat gluten to get an answer, but I would still advise people to at least try a blood test first. And if you have skin issues, you can ask for a skin test for herpetiform dermatitis. This is the skin manifestation of celiac--if a skin biopsy confirms herpetiform dermatitis, no invasive testing is needed--you are declared celiac. I've seen the rash, and it's pretty distinctive. I have a cousin that gets this rash, but she's never been tested. I have an uncle with wheat issues (his doctor just had him do the diet, no testing, before it was becoming common to try), so I have concluded that I have a familial problem with gluten, one way or another, lol!