Biopsy testing in Bay Area?

[bhlowe]

We have identical twin boys who have a TTG IGA counts of 58 and 25. Kaiser is backed up until February on testing and initial consultations. 

Wondering if there are any doctors who can do a biopsy out of network just to get the waiting over. Is there a "reasonable" cost to expect?

Not sure we want to go off gluten just to have to go back on in a month or two. 

Thanks in advance. 

[Scott Adams]

Welcome to the forum!

Would you also be able to share the test's reference level for a positive result?  The tests can vary depending on the manufacturer.

Are the boys experiencing any symptoms? February is not too far off, a bit over a month from now, so if going out of network would mean extra costs it might not be worth it.

[bhlowe]

14 minutes ago, Scott Adams said:

Welcome to the forum!

Would you also be able to share the test's reference level for a positive result?  The tests can vary depending on the manufacturer.

Are the boys experiencing any symptoms? February is not too far off, a bit over a month from now, so if going out of network would mean extra costs it might not be worth it.

Hi Scott,

Standard range is <= 14U/mL for those our TTG tests. 

They both had low iron.. 8 and 13ng/mL.. and after 65mg iron pills (twice normal dose) they tested 20 and 30ng/mL of iron.

One had trouble with his stomach during exercise. But otherwise seem healthy, but perhaps under weight. 

Understand it might be expensive. But we don't even have a phone call until Feb. So just looking at options. 

Thank you,

Brad

[Wheatwacked]

Hi Brad

How old are the boys and what do they think of the idea of gluten free? Has the rest of your family been tested? While a gluten free lifestyle is difficult, the health benefits are immense and it is no more difficult than a Jew eating Kosher or Muslim Halal.  You have evidence of three symptoms: stomach issues, iron deficient, and underweight plus positive TTG-IGA. How is their vitamin D plasma levels, homocysteine, vitamin B12? These can be indicators of inflammation or malabsorbtion.  Do they have problems with sinus congestion? There are well over 200 symptoms that have been linked to gluten. Many autoimmune diseases, thyroid, Type 1 diabetes all have low vitamin D status in common because it is the master regulator of our autoimmune system.

Soft White Wheat:Total Omega-3 fatty acids 36.0 mg; Total Omega-6 fatty acids 800 mg Foods highest in Total Omega-6 fatty acids

That is a 22:1 ratio of omega 6 to omega 3. As the optimum is believed to be 2:1 thats a lot of inflammatory fatty acids for minimal nutritional value other than carbohydrates and the synthetic fortifications added in.

I was 25 when my son was born in 1976 and diagnosed with Celiac Disease as soon as he was weaned. I count 19 symptoms that improved once I started GFD and improving my vitamin and mineral intakes after I bloated up and looked like a larger version of him as a baby 42 years earlier. They still don't know why some people get suddenly acute, but it is a Damacles Sword.

 

[Scott Adams]

So those are high levels of tTg, one is nearly 5x the marker for celiac disease, so it is very likely that they both do have celiac disease. It is also possible that their biopsies could be normal, or only show slight villi changes, as children's bodies repair themselves much faster, and this includes any villi damage.

There have been members here who have decided at your point to just have their kids go gluten-free and not do the endoscopy. If I were in your shoes I would probably get the endoscopies done, but would still plan on taking them gluten-free, no matter the outcome, as the tTg tests (together with their current symptoms) are very specific to celiac disease.

More info on interpreting blood test results is here:

 

[RMJ]

Maybe stay on gluten for now, and make sure they get to eat plenty of their favorite foods with gluten since they likely will need to go gluten free later?

[bhlowe]

Thanks for the replies. Boys are 14. They're not thrilled but will be on board, we think. They are very picky eaters, so it is going to be a challenge. 

Our new plan is to start going gluten free over the next month or so as we wait for the test. Find foods they like and don't like. But don't really want to have them go gluten free, have to go back to gluten and end up with an inconclusive result.  

It would be great if we could do a 95% gluten-free diet.. but haven't seen anyone recommending this. 

 

[Scott Adams]

14 year old boys who are picky and going gluten-free...if you can afford it:

http://jpspastry.com 

[Wheatwacked]

4 hours ago, bhlowe said:

They are very picky eaters

Another complication of Celiac Disease not mentioned very often.  When I was a kid I used to say I had compartents in my stomach. The pancake and milk compartments always filled before the bacon and eggs compartment, but I had to finish the pancakes before seconds on the other. Our bodies are smarter than our cultures. 

[RMJ]

6 hours ago, bhlowe said:

Thanks for the replies. Boys are 14. They're not thrilled but will be on board, we think. They are very picky eaters, so it is going to be a challenge. 

Our new plan is to start going gluten free over the next month or so as we wait for the test. Find foods they like and don't like. But don't really want to have them go gluten free, have to go back to gluten and end up with an inconclusive result.  

It would be great if we could do a 95% gluten-free diet.. but haven't seen anyone recommending this. 

 

The recommendation is two slices of wheat bread per day to get enough gluten for the tests to be accurate.  That could be a sandwich at one meal, and for the rest of their foods you could try gluten free options to see what they like/dislike.