My Entrolab Results- Any Advice

[natalie]

Hi,

My 4 year old daughter was diagnosed with celiac 1 1/2 years ago. She had the biopsy and blood work. During my research of the disease, I was sure I have suffered with this my whole life. Some of my symptoms : migraine headaches weekly, depression, foggy head, inability to concentrate, panick attacks, stuffy sinuses, exema, hairloss, stomach troubles, doc thought ibs 15 years ago, anemia, easy broken bones.

My daughters ped. was sure that my husband had it as he is so skinny 5'11" and 140pounds. Where as I have gained 50 pounds (unexplainable) since the birth of my last child 4 years ago. It was after her that I started with anemia as well.

Anyway, it took us awhile to arrange our bloodwork (Canadian heathcare system)after my daughter's diagnosis so I had been eating much less gluten ( almost none). I was shocked when my bloodwork came back negative. I let it go for 8 months and then decided to have Entrolab test me. While I was waiting for my results my doctor called and told me that my yearly blood work showed my IGG was slightly elevated and my IGA was at the top end of normal. Then I received these results from Entrolab:

Fecal Antigliadin IgA 209 ( normal Range <10)

Fecal Antitissue IgA 35 ( normal range <10)

Fecal Fat Score 371 ( normal range <300)

Fecal Anti-Casein IgA 42 ( normal<10)

Positive for genes: HLA-DQ2 & HLA-DQ8

Lately I have been reading alot of posts doubting Entrolab, maybe I shouldn't have bothered with them. I want to have a positive result before going gluten free for life. My doctor set up an appointment with a specialist in April. She thinks they will just go straight to the biopsy. Any opinions from anyone?

Thanks ,

Natalie

[CarlaB]

I certainly have my doubts about Enterolab. I think their high scores more likely indicate leaky gut, thus a high IgA for gluten because that's what happens with a leaky gut.

HOWEVER, I have NEVER seen scores as high as yours on IgA and you clearly have malabsorption and the genes.

I can understand wanting the biopsy for a clear diagnosis, but if you still don't get one, I'd go gluten-free anyway, for sure, no doubt about it.

Even though I have doubts, I still eat gluten-free and my Enterolab score was the only one that indicated gluten intolerance. My casein score was high, I went off it for six months, then challenged it and have no problems with it. This is why I think Enterolab indicated leaky gut, but that is just my opinion.

Weight GAIN is as common in celiac as weight LOSS.

I'd also go dairy free for a long time. If you want to try it after you give yourself plenty of time to heal (I'd do it for a year with the high score and the malapsorption you have), then maybe do a controlled challenge to see if it affects you.

[CarlaB]

I just wanted to clarify something I said. I still think that those with a positive score with Enterolab need to go gluten-free and work on healing their leaky gut. My doubts are more along the lines of whether it is a permanent intolerance after the leaky gut is healed for a NON-celiac.

For a celiac, or someone with the genes, I definately think it's a permanent thing.

I think there's still so much they need to learn about gluten intolerance/celiac.

[confused]

I just wanted to clarify something I said. I still think that those with a positive score with Enterolab need to go gluten-free and work on healing their leaky gut. My doubts are more along the lines of whether it is a permanent intolerance after the leaky gut is healed for a NON-celiac.

For a celiac, or someone with the genes, I definately think it's a permanent thing.

I think there's still so much they need to learn about gluten intolerance/celiac.

Just an question, if you do not think its permanent, then when u retest, wouldnt the numbers keep going down. or do they stay the same threw entrolab. And ifs non-celiac, then when the number go down, then would you be fine to eat wheat or gluten again, or would the cycle start all over.

paula

who is patiently waiting for her entrolab kit to get here

[CarlaB]

Just an question, if you do not think its permanent, then when u retest, wouldnt the numbers keep going down. or do they stay the same threw entrolab. And ifs non-celiac, then when the number go down, then would you be fine to eat wheat or gluten again, or would the cycle start all over.

paula

who is patiently waiting for her entrolab kit to get here

These are good questions.

I think some people will just start the cycle again. For others whose leaky guts were not caused by gluten, I think there is a CHANCE they might be able to eat it again. Again, this is my opinion and I have nothing to back it up except my experience.

I have Lyme Disease, and whenever I have a Lyme flare-up, I have digestive issues. The most recent flare-up (for the past four years) I have found that eating gluten-free eliminates the digestive issues. So, for me, where there is another clear problem, I think there is a chance since my leaky gut likely came from the Lyme, Candida, heavy metals, etc. But I am so intolerant that I react to even the smallest amount of contamination.

However, I think gluten is probably a problem for everyone on some level. I don't think it's a good idea for it to be a staple in anyone's diet. I'm just hoping that someday I can eat out again and not worry about contamination issues.

For a celiac, the process would definately start over again. I just predict that in the end they will find various levels of gluten intolerance, with celiac being the worst.

[e&j0304]

I think that you should remain on a regular diet until your appointment with the specialist in April. Try to eat gluten every day. That is the best way to get the most accurate testing. Hopefully they will just do a biopsy at that point. Conditions other than celiac can cause your high scores from enterolab. Hopefully Rachel will see this post and respond.

You are obviously having issues with the absorption of your food but that doesn't mean you definitely have celiac disease. If it's important for you to know for sure, like you stated, then I suggest that you keep eating gluten and see that specialist.

Good luck to you and I hope you get your answers!!

[CarlaB]

Conditions other than celiac can cause your high scores from enterolab.

You said it so much better than I!

[natalie]

Thanks everyone.

I think I will stick to with eating gluten until the specialist and see what he says.

Natalie