5.5 Months gluten-free And Starting To See Issues Again

[ryo]

hi,

my daughter was diagnosed with celiac in august.  our home is 99% gluten-free (my husband still keeps some beer in the house) and for the first 5 months she did great.  we had a few miss-steps where she was glutened and we were always able to pin point what had happened (eating out once, and another time i bought the wrong bread and gave it to her, not my best moment!).

 

for the last few weeks she has been showing symptoms again.  she is not eating, super moody/emotional, red rings around her eyes, always sleepy.  the symptoms are not as strong as they were before she was gluten-free or the same as the two times that we know she got glutened. i can not figure out anything that is causing the issues and honestly i don't know if i am just going crazy  we are set to go back for her 6 month check-up towards the end of feb. and i am wondering if i should try to have her seen sooner.

 

my question for all of you is...

did you ever see the issues return and not be able to pin point the issue?

do you think maybe she is having reactions to another food?

 

thank you for any insight you may have!

[frieze]

how old is this child? remember, not everything is gluten related.

[ryo]

she is 5 years old and we have been trying to figure out if it is something else going on with her.  it is the level of being worn out connected with the not eating that really has me worried.  it could just be a normal development stage and it has gotten so hard for us to separate the two issues.  

[StephanieL]

Any possibility it may be art supplies or something else in school if she's in school?

Sorry you're dealing with this.

[GretaJane]

Playdoh?

Could it be medicines, vitamins or supplements? They can contain gluten as a filler.

Could she be anemic?

Maybe try going grain free for a whileto see if that helps. Most grains that are naturally gluten-free often contain cc gluten that can affect people.

A naturopath could help get a blood test to look for food intolerances.

Good luck!

[StephanieL]

Maybe try going grain free for a whileto see if that helps. Most grains that are naturally gluten-free often contain cc gluten that can affect people.

A naturopath could help get a blood test to look for food intolerances.

 

Can you site your source of your statement "naturally gluten free are often CC'ed"?  I've been reading and dealing with this for my child for  4+ years now and haven't found this to be so. Oats are often an issue but things like rice and other grains are most often fine.

[snowmom]

I feel for you! It's so hard to see your kid with no energy and no appetite. Have you called the pediatrician or GI? I'm so very new to celiac that I really don't know how long it takes to clear gluten, but after 6 months, maybe  you are right that it is worth investigating other food issues, other autoimmune issues that run with celiac, and other totally unrelated medical issues (even while you continue to ferret out possible cc as mentioned above). Or, like you said, it could just be a developmental phase.

 

I'm such a celiac newbie that I don't have useful advice to offer, but it seems like it is worth running your concerns past a doctor. I think your instincts about bumping up the late February appointment are sound.

[greenbeanie]

I would also try to bump up the appointment. If they're booked solid, maybe they could at least give you the lab slip to get the follow-up bloodwork done sooner, which might help sort out whether it's a cc issue or something else. They could call with the results even if you can't get in to see the doctor until late February. If this is the first bloodwork since diagnosis they'd need to run more than just the tTG, though, since you'd probably only have one previous test to compare it to. (I discovered this the hard way - my daughter's GI only orders tTG for follow-up, but not the DGP tests, which may have helped us distinguish between ongoing gluten exposure and just taking more than six months to decrease to a normal tTG level.)

My daughter was diagnosed 7 months ago, and I've also noticed a return of some of her symptoms lately, for no apparent reason. I can't be sure whether there's a real difference or I'm just imagining it. I'm hoping it's something simple, like perhaps low vitamin D, since we've been forced indoors by extreme cold for most of the last three weeks! (She was low on D at diagnosis despite lots of time outdoors, so even with supplements now it may still be low - doctors haven't retested it yet.) I hope your daughter feels better soon.

[bartfull]

Have you tried eliminating dairy? That would be the first place to start.

[ryo]

thank you all for your thoughts.  i did call her GI doctor a few days ago.  today we had all of her blood work done and are now waiting results.  over the past 6 months she has gained 1 pound and grown 1 inch.  based on the growth chart she has actually fallen further off her curve.  i know i need to keep this all in perspective but with the way she feels right now it was a hard fact to hear.

 

we have gone through everything in our kitchen and evaluated all sources of contamination.  right now the only thing we can really see as any option is her vitamins. please know i am not saying this is the cause of her getting gluten it just the only place we can really see room for error.  the brand she takes recently changed labels.  with this label change they removed "gluten free". i called the company when the change happened and they assured me they were still gluten free and it was just a design change.  i bought it at the time (about three weeks ago). but the last few days i went back to them and did some more research.  it turns out it was a change to how they are made but they still insist they are gluten free.  what doesn't sit well with us is why in the world would you remove gluten free from a kids vitamin based on design.  it seems fishy and that is enough of a reason for us to stop using them.  again i am not saying with any proof that this is the cause but it's all i can really try eliminating right now.

 

today we tested for food allergies, vit. d, iron levels, along with the other test she already had planned for next month.  now we wait and do our very best to get her back on track.

 

thank you again for all your thoughts!  very, very helpful. 

[StephanieL]

Many companies are taking the "gluten free" label off things because of the new government standard they are implementing. Companies aren't suppose to make the claim if they can't back it up even if there are no gluten ingredients in it. It may be worth getting test strips to see about the Vits. but they are very pricy.  That is how we found out a brand of mustard was an issue for us.

 

Have you seen an endocrinologist?  Tested for thyroid issues and nutritional levels and vits? I think I would start there. Between the way she's feeling and the growth issues that would be where I would start really.  DS is still very small but he did sprout a bit after we figured out he had a thyroid issue after his Celiac tests were coming back all over the place.  

Allergy testing is HIGHLY inaccurate.  Nothing you have said yells allergy to me so I'm not sure why that is even being tested for.  I would be highly suspicious of any allergy testing baed on what you have said.  

[ryo]

the test strips are a great idea!  at this point i would love to have the help identifying if we have a gluten issue.

 

we are working closely with an endocrinologist.  when this all started she also had a low hormone level that was cause for further investigation.  at the same time her thyroid was tested and it appears to be in good shape.  i asked about retesting this time and we decided to wait to look into that at this point.  what i am having a hard time accepting is that she was doing so great for 5 months then all of the sudden it went down hill again (and quickly).  her growth has been very slow so that could be enough of an indication that something over then celiac is going on.  at this point so hard to know!  really looking forward to the blood test coming back next week so we can start to sort through the info.

 

yes, allergy testing is a crazy road to go down.  my doctor spent a bunch of time talking about how inaccurate the testing can be and how you really have to dig much deeper to evaluate if you are having a food allergy.  i guess it is like all the rest of this… testing, playing with food, waiting  i am hoping it is not a another food allergy but we need to keep our eyes open for all possibilities. 

[ryo]

i am thrilled about this...

 

"Many companies are taking the "gluten free" label off things because of the new government standard they are implementing. Companies aren't suppose to make the claim if they can't back it up even if there are no gluten ingredients in it."

 

if they can't back it up i don't want to feed it to my daughter! i know it will make it harder for companies to offer us gluten-free options but at least we will be able to trust the label more.

[Heather-707]

I second the oat comment.   10% of Celiacs can't handle oats, my LO included.   The reaction certainly isn't as obvious, but is definitely a problem. 

[w8in4dave]

I just hate it when kids have to go thru stuff! I hope you find the problem. Hopefully you find it soon.

[GFinDC]

Hi Ryo,

 

Have you made a list of anything that may have changed in her diet since before the problems started?  I imagine you have done that, but it is easy to miss something in my experience.  So another review might be helpful.  The most likely source of a gluten ingredient slipping in is in processed foods or products like vitamins, meds, drinks.  Those are the first things to look at as the potential source.

[mommida]

YES We had improvement on a gluten free diet and then had "gluten symptoms" flare up again.

 

My daughter was diagnosed with Celiac when she was 15 months old.  Things went great on a gluten free diet until 5 1/2 years old she was diagnosed with Eosinophilic Esophagitis when she turned 6.  There is now a known link between Celiac and EE.  (an important note about EE and testing for EE ~ 1. the doctor must order the pathologist to test the sample for eosinophils.(red dye and counts) 2. Once the immune system activates eosinophils, they can keep harming healthy tissue for 12 days. 3. There is strong evidence that proves seasonal airborne allergens "trigger" eosinophil production ((this is important to remember for scoping for the eosinophil damage.  My daughter has been scoped in December~ the damage was there from late summer early fall allergens.  She was scoped in January ~ no damage present or eosinophils present.  She was on an elimination diet that removed all top 8 allergens and peas; and the deep freeze and deep snow covered any ragweed or plant pollens.  YOU MAY NOT GET A PROPER DIAGNOSES DEPENDING ON THE SEASON.

 

When we brought her back in for testing there is a list of disorders/diseases that present with "celiac like" symptoms that can be ruled in or out with an endoscopy with biopsy.  So you might have to consider having another scope done.

such as...

H. Ployri

parasites

congenital defect

eosinophilic disorders (eosinophil damage can be in any part of gastro tract)

Celiac disease that does get better on a gluten free diet/ Celiac sprue

another food intolerance

even the belly distention can be hiding a hernia

the list goes on and on......

 

Keep a journal of diet, activities, symptoms until your appointment.  It will help track down other food intolerances and help you become more knowledgable should you have to avoid any other foods.