ForTrent9

Doesn't matter what I think. See what Celiac experts think:

http://www.curecelia...erolab-or-cyrex

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?
We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.
Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease.
We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough).
Further reading: “Detection of secretory IgA antibodies against gliadin and human tissue transglutaminase in stool to screen for coeliac disease in children: validation study” at BMJ.com"

thanks!!!!

Hello:)

 

I am a type 2 Diabetic on medication and diet/exercise regimen.  Recently I started feeling nauseous and even vomited a few times, always after eating something with gluten in it.I have also been having a hard time controlling my blood sugar and have been craving bad things like Italian bread, cookies, and cake, EEEEK!!   For the past 8 years or so, I have had terrible bloating, gas, alternating diahrreah and constipation with stomach cramping. Also joint pain, fatigue, foggy brain. I had several surgeries during that time and feel that might have triggered the Celiac, and that in turn may have contributed to the Diabetes. So I started thinking after seeing something about Celiac on TV (I KNOW, sounds hypochondriac-ish, lol) that I would eliminate gluten from my diet.  It's been 3 days only, and I already feel much better and hope to improve every day until I feel human again!

 

Anyway, I haven't been formally diagnosed and since I don't have health insurance, doubt I'll have the funds to do so.  I already spend a lot of money on meds and supplements (all gluten-free, I checked) for the diabetes and other issues.  Is it completely necessary to obtain a formal diagnosis, if I am showing marked improvement with diet? There really doesn't seem to be any other medical treatment for Celiac besides eliminating Gluten.  Any advice for a newbie?

Hi, we are new to this too! My son and I>

I dont think you need a formal diagnosis, or an accurate one, I think if you eliminate the gluten, Totally gluten free, and you feel better, Terrific! It is worth a shot.

God Bless and good luck:)

Welcome Trent's Mom or Dad?

 

Did he have a complete celiac antibody panel?

 

Total Serum IgA

tTG - IgA and IgG

EMA - IgA

DGP - IgA and IgG

 

Any nutrient testing?

 

Vitamins B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

 

Complete Blood Count (CBC) and Complete Metabolic Panel (CMP)?

 

Were you gluten-free or gluten light for any period of time before the celiac antibody tests?

 

Is it possible he is eating gluten at school or in a friend's home?

 

Hang in there -- not all children with Celiac Disease test positive -- dietary results are very important with kids -- try keeping a log of what he is eating along with any symptoms -- it really helps to find possible problem foods (even gluten-free processed foods can be problematic when newly gluten-free)

Thank you, but the Dr. only tested D and Iron , CBC, Complete metabolic panel, celiac panel, and Thyroid.

We were on a light gluten free when testing with blood work. No , he is so afraid to consume Gluten so he is very disciplined about his food choices! Thank God!

Have you heard of enterolab? and what are your opinions? it cost alot, but I am interested!

I don't understand what you mean by hidden ingredients. The ingredient list will cover everything, although some vague terms are allowed. Wheat can not be hidden--it must be explicitly declared on the label as "wheat."

You say you are newly gluten-free. If you have celiac disease, then your digestive tract will have been damaged. Going gluten-free starts the process of healing. How long it takes varies from individual, and is affected by age and the degree of damage present. During the healing process you may continue to have digestive issues that have nothing to do with what you eat.

Thank you, i guess i meant, the tuna that I ate was prepared with vegetable broth...didn't realize this was in the can of tuna until after I consumed and noticed some symptoms.
I am new to the ingredient list, sorry!

As a child, I remember being curled up in a ball on the couch after many meals because of the pain... and nothing helped it go away, I would just lay there for 30 minutes or more until it finally faded.  As an adult, I learned to suck it up, but I wouldn't wish it on any little body.     What you describe was definitely one of my symptoms, including the "C".

Avoiding gluten for a week will tell you very very little.  The doctor should order tests, and schedule an endoscopic biopsy (if you want to go that route), and once his testing is complete then he should go gluten-free for at least 3 months. One week is barely enough time to notice a change; he could start noticing less stomach pain, but many people (like myself) end up feeling worse, headachey, tired and cranky in those early days... There is a chance the change won't be positive at first if he has any sort of withdrawl.

Besides, blood work will come up as a negative, regardless of his celiac status, if he is not consuming gluten at the time of testing.  This is especially true if he is new to the disease and his autoantibody levels are not high yet; in fact being in the early stages of the disease could cause a false negative blood test even if he is eating gluten.

I would get the blood work done as soon as possible; your family doctor can order it.  The most common blood tests are:
ttg IgA and ttg IgG
EMA IgA
DGP IgA and DGP IgG
total serum IgA (to see if he has adequate levels of IgA for the tests to be relevant

If those tests are negative, try the gluten-free diet anyway. GI is MUCH more common than celiac and can cause the same awful symptoms, just without the organ damage. As you know, GI is not something to be taken lightly.

Celiacs are often low in nutrients so you might see if you can have his D, B12, iron, Ca, and potassium levels too.

Good luck to you. I hope he feels well soon.

Thank you so much, that helps...we are heading to our primary Dr. tomorrow, and I will bring this list of blood work that I would like tested!