Three Fold - My kids, myself and starting gluten-free

[Katie S]

Hello All -  First time on the site and forum.  Wow, so much information.....greatly appreciate the site and forum already! 

First, 7 yr old son diagnosed T1 Diabetic May 22 this year, then in July diagnosed Celiac by blood test alone (no endo).  Pediatric GI suggested getting all tested in family.  Husband negative, 9 yr old son negative..but 10 year old daughter positive on labs.  Pediatric GI said no endo for her either, just gluten-free for both. Neither of my kids have the typical symptoms I would consider celiac, so I still am trying to understand symptoms as well.  That doc is 6 hrs away because we live in a rural area, so talked briefly to nutritionist on the phone....and they sent us a book and that's all the info we received with a follow up in 6 months.  So, I've just been researching myself and we are doing the best I can, but I feel like I'm still missing things because of symptoms or behavior.   Any specific advice for newbies and how to ensure all gluten is taken out?

So my blood test came back negative as well, so my Primary Care Physician says I do not have it.  However, when I read on a few other blogs and forums there is discussion of deficiencies.  I already have one autoimmune (Spondyloarthropathy) which took a year to figure out because of my joint and muscle pain, but found my HLAB27 to be positive.   Over the last five plus years I have struggled with Vitamin D deficiency, B12 deficiency which I take shots for, and in the last year Iron Deficiency which I ended up having an infusion just a month ago for.  I also have unspecified kidney disease with no known cause.   Sooo.....with all these things, then two of my children are diagnosed Celiac, I am concerned I may be having some other gut related issues or possibly celiac as well.  Can you be positive just by endoscopy even if your blood work is negative?    I am thinking of going to a GI myself, even though my PCP says its not necessary.   Has anyone had similar situation with the deficiencies?   I have been to so many docs over the past several years I start to think I'm going crazy, but I've just got to get to the bottom of this.    Any thoughts and advice would be greatly appreciated!  

Thank you!  Katie

[cyclinglady]

Hi Katie!  

Welcome to the forum.

I do not think you can rule out celiac disease yet.  Exactly which celiac blood tests did you have?  Usually just the TTG is given (cheapest and catches most), but rest includes the DGP and the EMA.  In my case, I test positive to only the DGP IgA is even on many repeats.  Yet I had intestinal damage.  My only symptom was iron-deficiency anemia.   Some celiacs are seronegative.  I think it is about 10% of celiacs.  Then an endoscopy is needed to make the diagnosis.  Some celiacs are also IgA deficient.  Did they run an Immunoglobulin A (IgA) test?  This test for celiac disease testing is used as a control test which validates all the celiac IgA tests: EMA IgA, TTG IgA and DGP IgA.  If you are deficient, the IgG versions should be run.  

You can read through the forum for dietary information.  Best (or easiest) is to start off with non-processed foods (or those labeled gluten free) until you master reading labels.  Easy to make rice, beans, meats, fish, veggies, fruit, eggs, nuts, etc.  Avoid oatmeal as some celiacs react to it.  Later try oats that are purity protocol (grown in dedicated fields).   Consider having the house go gluten free too to support the celiac kids and after everyone has been tested.  My house is gluten free.  My kid gets her gluten fix at school.  It is nice to have a place to relax and not worry about gluten.  But you will find your way and do what is best for your family.  

We are here to help!  So ask plenty of questions or browse through the forum.  

[GFinDC]

Hi Katie,

Vitamin D is one common deficiency for celiacs.   The B vitamins are another and some minerals like copper, selenium, manganese, boron iron should be looked at.

Some doctors will diagnose on positive endoscopy and response to the gluten-free diet with improvement in symptoms.  There is also a gene test for celiac genetics.  But almost 30% of people have one of the genes yet only 1% go on to develop celiac disease.

I had low vitamin D for years and was given 50K IU weekly RX for it.  But it didn't improve until I took 1000 IU daily.  Your body can only absorb so much at a time so 1000 daily is more effective than 50K weekly.  Boron also helps with vitamin D levels.

The usual gluten challenge is 12 weeks of eating some gluten daily before the blood antibodies tests and 2 weeks eating gluten before the endoscopy test.

 

Edited September 7, 2019 by GFinDC

[Katie S]

On 9/4/2019 at 10:11 PM, cyclinglady said:

Hi Katie!  

Welcome to the forum.

I do not think you can rule out celiac disease yet.  Exactly which celiac blood tests did you have?  Usually just the TTG is given (cheapest and catches most), but rest includes the DGP and the EMA.  In my case, I test positive to only the DGP IgA is even on many repeats.  Yet I had intestinal damage.  My only symptom was iron-deficiency anemia.   Some celiacs are seronegative.  I think it is about 10% of celiacs.  Then an endoscopy is needed to make the diagnosis.  Some celiacs are also IgA deficient.  Did they run an Immunoglobulin A (IgA) test?  This test for celiac disease testing is used as a control test which validates all the celiac IgA tests: EMA IgA, TTG IgA and DGP IgA.  If you are deficient, the IgG versions should be run.  

You can read through the forum for dietary information.  Best (or easiest) is to start off with non-processed foods (or those labeled gluten free) until you master reading labels.  Easy to make rice, beans, meats, fish, veggies, fruit, eggs, nuts, etc.  Avoid oatmeal as some celiacs react to it.  Later try oats that are purity protocol (grown in dedicated fields).   Consider having the house go gluten free too to support the celiac kids and after everyone has been tested.  My house is gluten free.  My kid gets her gluten fix at school.  It is nice to have a place to relax and not worry about gluten.  But you will find your way and do what is best for your family.  

We are here to help!  So ask plenty of questions or browse through the forum.  

Thanks.  My IgA was normal.  TT IgA and Celiac Reflex Panel within normal range.    I think I might go to a gastro just to have a visit about things.  

We have pretty much switched to whole house gluten-free.  I do feel better on gluten-free even though not celiac.  

Oatmeal was one thing we didn't know about, so I will remove that.    Thanks! 

[RMJ]

TTG IgA and Celiac Reflex Panel probably do not cover the whole range of celiac blood tests. Hopefully a gastro will order the full panel for you.

[GFinDC]

Hi Katie,

It's simplest to start the gluten-free diet by going to a whole foods diet.  Avoid most processed foods.  Instead eat meats, veggies, nuts and eggs.  This will avoid lots of time reading labels in stores and confusion.  So it eliminates worry and saves time.  This diet also gives your body the best chance to heal and your gut a break.  Dairy should be avoided also for a few months.

There are a some products like Mission corn tortillas that are simple and safe.  It is worth trying to stick to foods with 3 ingredients or less.