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Hi everyone,

My name is Chris and it appears that I may have Celiac. I have recently completed the GI and the biopsy came back with blunted villi and mucosal duodenitis (sp?). I'm supposed to go in next week for a blood test specifically to test for Celiac.

I have had digestion issues off and on for years my entire life, however it's been within the last 4 years that things started to get escalate including attacks that have sent me to the hospital. The situation has gotten even worse since July of '07 where I am now pretty much not absorbing much of anything that I eat. I've lost a total of 30 pounds and now weigh in at 110 pounds (height is 5'4").

Additionally -- some of the attacks have been so bad that my body goes into overdrive trying to get rid of the "intruder" and it responds as it would with a severe allergic reaction. This sent me to meet with an allergist who has eliminated HAE (angioedema) and the only things that I responded to are Eggs(1), Milk(2), and Beef(3), listed in order of sensitivity along with scores.

I do have a couple of questions and would appreciate any advice.

1 - I'm seeing references here to enterolab. What exactly is that?

2 - Once the nurse from the GI office informed me of the biopsy results and the upcoming bloodwork, I stopped eating gluten. I have been gluton free for 2 days now. But further reading on the internet had me run across a reference that I should be eating a normal gluten diet prior to the blood test. My only issue is that is that today was the first day that I was able to actually eat something that didn't send me into stomach cramps. The pain is intolerable and I'm so weary of it. If this is something that I have to do, then of course I will do it, but I'm wondering if anyone here had stopped ingesting gluton prior to their bloodwork.

My biggest concern right now is the weight loss. While I understand that responses to going gluten free can be very individualistic, I'm hoping for some suggestions on timelines where other people who experienced weight loss might share with me how long it took for their weight to stabilize and then for them to regain weight.

Having this problem and having had it undiagnosed for so long has robbed me of quite a bit, not only due to never feeling well, but also the depression and irritability that I have had which has impacted my quality of life, but also most recently, it has cost me my marriage. I guess that I really need some hope that things do get better.

Thanks in advance for any help.

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Celiac.com Sponsor (A8):

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Hi, and welcome to these boards. Your GI has done things backwards. Normally the blood test is done first, and then the biopsy to confirm the diagnosis. If your villi are blunted, and you have the symptoms, you have celiac disease. Especially since you've had a great response to the diet, there is no doubt at all about the diagnosis.

If I was you, I'd keep eating gluten-free and skip the blood test. You already have a firm diagnosis of celiac disease, no more tests needed. Geez, what is it with doctors these days!

It might take some time before you will gain weight, because you can't absorb nutrients due to villi damage. Be patient, things will normalize eventually. But you have been ill for a long time, you won't heal overnight.

Also, if you have tested allergic to milk and eggs, it would be wise to also eliminate those for the time being. I would also include soy in that list, as it can also hinder healing (besides the fact that unfermented soy is unhealthy).

Make sure you get enough protein and healthy fat. And yes, your body needs saturated fat, non-hydrogenated coconut oil is one of the healthiest saturated fats.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thank you for the quick reply, Ursa. It is really appreciated.

The GI procedure was done on the heels of an emergency room visit (the very next morning) so I won't hold hard feelings about the backwards approach. I was just so happy that someone was being very aggressive and serious in trying to find out what was happening.

I'll post-pone the bloodwork until I meet with my primary care physician and talk with her about it. I appreciate the validation you offer for that. Thinking about going back on gluten just for bloodwork and going through that pain again is something that I just really don't want to do.

Also, thank you for the advice on the non-hydrogenated coconut oil. I've added it to my shopping list. Today is the day I go out for my first gluten free grocery shopping trip!

I've also seen references on the internet about working with a dietician. Is this something that a lot of folks do or do most folks just go forward, avoid gluten and have things sort out on their own over time? I meet with my primary care physician on the 24th (whom I absolutely adore!) and I know she'd refer me to a dietician in a heartbeat if I asked for it. I just want to make sure it would actually be helpful or is that something that really wouldn't be worth the expense?

Thank you for your patience with yet another newbie to this. It's very nice to know that there is a network of individuals to help out. Makes it not so lonely and scary. :)

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1 - I'm seeing references here to enterolab. What exactly is that?

2 - Once the nurse from the GI office informed me of the biopsy results and the upcoming bloodwork, I stopped eating gluten. I have been gluton free for 2 days now. But further reading on the internet had me run across a reference that I should be eating a normal gluten diet prior to the blood test. My only issue is that is that today was the first day that I was able to actually eat something that didn't send me into stomach cramps. The pain is intolerable and I'm so weary of it. If this is something that I have to do, then of course I will do it, but I'm wondering if anyone here had stopped ingesting gluton prior to their bloodwork.

Enterolab is another form of testing that uses a stool sample rather than blood. It is generally used by those who cannot or choose not to go through testing in the traditional bloodwork/biopsy route. Enterolab's results are not diagnostic. It cannot give you a celiac diagnosis. It can only say that you are producing antibodies to gluten. Enterolab's results are not widely accepted by much of mainstream medicine, because Dr. Fine has never published his results in a peer reviewed forum. Since you already have positive results on a biopsy, I would not be inclined to do enerolab testing if I were in your situation. The biopsy is currently considered the "gold standard" for diagnosis.

I had my biopsy before my bloodwork as well. Normally the bloodwork leads the doctor to order the biopsy. That's the reason it is usually the other way around. A few days off of gluten is not going to be enough to skew your results. It's when you start to go longer than a few days that you can run into problems. If I were in your situation, I would get into the lab as soon as possible and have the complete celaic panel done. That will give you a baseline measurement now to monitor your healing against. Celeiac bloodwork should be repeated yearly to monitor compliance and healing. If you get a reading now, you will have something to compare it to with your future bloodwork. However, I will mention that it is not impossible to have negative bloodwork and a positive biopsy. It is still a celiac diagnosis, however. If your bloodwork is negative, I would still avoid gluten.

Hope this helps.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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I see no reason not to have the blood work done, just remember that 30% of celiac blood testing is negative unless the villi is completely destroyed. If you get an ignorant doctor they might try to convince you that, based on negative blood work, that you don't have celiac disease. A biopsy should be the final word on that.

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Thank you for the replies everyone. Sorry for the delay..I've been busy de-toxifying the house so to speak and running here and there replenishing the pantry.

I meet with my primary care doctor in the morning and will be discussing everything with her including the advice given here. I'm still gluten-free and I have now been on liquid vitamins for a week which is really starting to help the energy levels. Still hanging around at 110.5 pounds however, but at least I'm no longer losing weight!! :)

I think at this time, the only way I would consider going back on gluten for the blood test would be if I was also provided something for the nausea and pain management. At the end (prior to the emergency GI procedure) working was impossible and I was in the hospital the evening prior to the procedure.

Thanks again to everyone posting here.

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Safe foods: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

Unsafe foods: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

companies that won't hide gluten on their labels: http://www.glutenfreeindy.com/foodlists/index.htm

Hope these help in navigating labels.

Other good websites for info:

www.celiacdiseasecenter.columbia.edu

www.celiacdisease.net

www.celiaccenter.org

www.celiaccentral.org

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I see no reason not to have the blood work done, just remember that 30% of celiac blood testing is negative unless the villi is completely destroyed. If you get an ignorant doctor they might try to convince you that, based on negative blood work, that you don't have celiac disease. A biopsy should be the final word on that.

Please forgive the correction but up to 30% of us even with total villi destruction will show negative. As one who was in end stage celiac before diagnosis with constant negative blood work I thought it was important to clarify. I agree with the others about the need to stay on the diet regardless of the results of the blood test. The endo was conclusive, you are celiac no matter what the blood tests show. Choosing to do them is up to you, just don't go by the result if it is negative. Dietary response is really the final word and when you combine that with the 'gold standard' of a positive biopsy there really is no doubt.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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