Gluten Sensitivities and blood testing

[Dace]

OK I am starting a new thread because I have posted to a couple people but I know there are several here with similar issues and I need some feedback!

I would like to have my DH tested for gluten sensitivities....then my kids.

He has terrible digestion, constant reflux, belly bulge...he has been eating pretty well and running 3-10 miles 4 times per week for 6 weeks and has not lost a single pound. There is more but that is the thumbnail.

So we do not have insurance right now, but I want to take him to get some blood work done. To be most cost effective, I need to know exactly what to ask for.

My 16 yr old had tons of blood work done looking for celiacs among other things...came back negative and yet, she has diarrhea daily, is 5"7" and 100 lbs, irregular periods and migraines...so I know something is up...but they did not test for what I needed tested!.

Can anyone advise me?

 

[TanksHill]

Let me see if I can find the paper work with the specific test name. If not I am sure someone around here will know it.

g

 

[Woodland Woman]

I think the blood test for gluten sensitivities is very inaccurate. I had it done and my doctor said to try going gluten free even before I got the results back. He said the next step would be a test with a tube going down your throat through your stomach and into the small intestine to get a scraping. Well I did go gluten free and my problems cleared up almost immediately. I think within 2 weeks. An unexpected benefit is I no longer get depressed.

 

[ToLiveToLaugh]

I think the blood test for gluten sensitivities is very inaccurate. I had it done and my doctor said to try going gluten free even before I got the results back. He said the next step would be a test with a tube going down your throat through your stomach and into the small intestine to get a scraping. Well I did go gluten free and my problems cleared up almost immediately. I think within 2 weeks. An unexpected benefit is I no longer get depressed.

If you do go GF before the testing (not the results) it won't show up in bloodwork. If early on, it can also result in negative biopsy results. Testing only shows positive when celiac inflammation is present.

Just a pointer! No use wasting the money on the test if it won't be conclusive.

Found from asking my old roommate who has celiac:
accessory tests to celiac test, to determine severity of problem:
* CBC (complete blood count) to look for anemia
* ESR (erythrocyte sedimentation rate) to evaluate inflammation
* CRP (C-Reactive protein) to evaluate inflammation
* CMP (comprehensive metabolic panel) to determine electrolyte, protein, and calcium levels, and to verify the status of the kidney and liver
* Vitamin D, E, and B12 to measure vitamin deficiencies
* Stool fat, to help evaluate malabsorption

Anti-tTG, AGA, and/or EMA tests are used to help determine asymptomatic celiac disease.
"Autoantibody levels should initially be ordered when a patient still has gluten in their diet. Positive or indeterminate results will then be confirmed with a biopsy. One or more antibody tests may be ordered when a patient with celiac disease has been on a gluten-free diet for a period of time. This is done to verify that antibody levels have decreased and to verify that the diet has been effective in relieving symptoms and reversing the intestinal lining damage (this is sometimes still confirmed with a second biopsy). When a patients symptoms have not subsided, celiac disease tests may be ordered to check for dietary compliance and to help the doctor and patient look for either hidden gluten in the patients diet or for other reasons for their unrelieved symptoms. Asymptomatic people may be tested if they have a close relative with celiac disease, but celiac disease testing is not recommended at this time as a screen for the general population"

Hope that helps! THIS is the link she gave me: http://www.labtestsonline.org/understanding/analytes/celiac_disease/test.html

Edited to add that the Anti-tTG, AGA, and EMA tests are allergy/intolerance tests.

 

[FarmerDenise]

I came across this article on gluten sensitivity. Thought some of you might find it interesting.
http://www.huffingtonpost.com/dr-david-perlmutter-md/gluten-impacts-the-brain_b_785901.html

 

[CJW]

I know that having a diagnoses is important to you, but you might save in the end by having a private lab do the tests and give you the results directly.

I am in the process of getting insurance. I mentioned that I was Gluten Free, and they were curious if I was diagnosed with Celiac. Both (at two different companies) of the agents I spoke with advised me NOT to get seek a Celiac diagnoses from a doctor because once you are diagnosed, your insurance rates will go up, and it will be harder to obtain insurance in the future.

It sounds as though your whole family has symptoms that could improve with a diet change. Why not put the whole family on a G-free diet? See what happens.

Here is the lab I was talking about with the stool test. www.enterolab.com

Also-Here is an interesting article that cited a study where over half of the children with no markers or digestive damage showed improvement in overall health after going gluten free (and how Gluten is also linked to neurological issues.):

http://www.celiac.com/articles/21880/1/Is-Gluten-Sensitivity-a-Neurological-Disease/Page1.html

 

[Dace]

Wow old thread!

So I guess I should update for you newer folks.

I pulled the lab work that my older DD had done 5 years walker when she was 11. Her gliadin antibody levels were elevated and came back labeled ABNORMAL.....although her Dr did not mention that

Got them both off of gluten with great results, oldest still eats it on occasion and usually ends up with diarrhea. Although I have scolded her till I am blue in the face, so please don't tell me how damaging that is, she does not et it at home.

Any who......yes we are GF

 

[lwheelr]

My kids have Crohn's, and the symptoms can be similar, though much more complicated. It is difficult getting them to not eat the things they should not eat. Found a bag of Cheetos on my daughter's bed the other day. Sigh.

 

[Dace]

Lwheelr....what are their symptoms and what should they be eating?

 

[abifae]

Got them both off of gluten with great results, oldest still eats it on occasion and usually ends up with diarrhea. Although I have scolded her till I am blue in the face, so please don't tell me how damaging that is, she does not eat it at home.

Yeh. Strict diets require the dieter's participation

Everyone is shocked I stick my diet with no bread. Really? If you pooped blood every time you ate bread, it would be hard to STOP? Seriously? LOL.

Eventually, she'll either want to feel better all the time and not eat the junk, or she'll choose to eat junk and be sick. All you can do is enjoy feeling better yourself and remind her it's her choice when she feels like crud!