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Celiac Testing while eating Paleo


Minouki

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Hello everyone!

I have been eating gluten free for about 6 months due to a gluten intolerance (positive IgG and anti-gliadin) and I decided to take it a bit further and began a Whole 30 about 10 days ago. I feel wonderful! I am sleeping like a baby, my stomach is flat, I feel happy... Imagine if I feel this way after 10 days, what it can do for my health in one month... This has been a true revelation.

However, I met with my gastroenterologist yesterday and he told me that I may have Celiac Disease and that I would need to do a gluten challenge for about 8 weeks (before a clonoscopy is done in January, the intestine has to be exposed to gluten for a while). The idea of having a disease and of eating gluten for 8 weeks is absolutely dreadful.

Now... Here's my dilemma. I was told that I needed to eat the equivalent of 2-3 slices of bread per day for these 8 weeks but I would like to stay as close as possible to my Whole 30 at the same time. I know this can sound contradictory but it seems that I have no choice...

Can you give me advice on how I can achieve my goals while staying as healthy as possible?

Thank you.

Minouki

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Minouki -

In my (completely non-medical, non-official, and totally personal) opinion, you have two choices here.

First, let me ask you this: How will your life change if you are diagnosed Celiac (other than higher health insurance rates, if you are in the States)? I feel like I can ask you that, because I was diagnosed with Crohn's in 2005 and I wish I never had been. If I had known to change my diet then, I probably never would have. Eating this way has me living completely unmedicated and symptom-free (2 years now). My diagnosis has only gained me major medical bills, many doctors appointments, and higher insurance costs. If you are committed to living gluten free for the rest of your life, will a diagnosis gain you anything?

If, however, having that diagnosis is important to you - and I can see why it would be - then you can do one of two things. You can either complete your 30 days and put off the challenge until such time as you feel ready to take it on, or follow your doctor's instructions (re: bread) while keeping the rest of your diet as squeaky clean as possible. You will still do yourself a serious benefit by eliminating the other foods that make you less healthy, and help yourself and your doctors pin down the true cause of your trouble without any danger of false readings.

That's just my two cents, but I hope it helps you a bit! Best wishes on your journey!

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Hi Robin!

Thank you so much for your two cents. You raise some very valuable points. I live in Canada so we do not have to pay for healthcare. We have a very efficient system and I am quite amazed at this given that I lived in the US for a few years and had to pay everything out of my own pocket.

To answer your question, I guess I will "finally" know what my symptoms are due to. It's a bit like closing an open loop... "Am I dealing with a food intolerance or with a more serious disease?". Also, I have two small children so if I do have CD, I will ensure that they get tested early on and do not have to go through what I have been through (e.g. bouts of diarrhea, skin issues, yeast issues, etc..) or possibly worse. I guess i just want to know... It's only 8 weeks after all and then, I will revert to my Paleo way of eating.

I like your suggestion about eating as squeaky clean as possible. I like it a lot.

Thanks so much!

Minouki

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Given that healthcare costs aren't an issue for you, I think I would have chosen the same path. Having kids myself, I completely understand and support the desire to have that information, even if just for their sake.

I wish you the very, very best through this journey and I do hope you'll keep us posted on how you're doing during the process!

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I support your decision Min as you will know what's best for you and your family. But I thought I would relate my story.... I was wheat and rye free for ten years after a positive challenge test done as part of other allergy testing and treatment (hay fever). This was before celiacs was really on the radar. Then my aunt urged me to do the test after 2 of her daughters were diagnosed. I put on 15 pounds and had severe skin problems during the testing, which came back negative (positive blood test but okay biopsy). I got my health back after a few months but then since I didn't have celiacs I stopped being so strict and my health become much poorer for many years. It's only recently that I have got enough courage to commit once more to a "non-normal" diet and am determined to solve all my health problems by a genuine lifelong commitment to paleo eating and the whole9 approach.

PS no one is born with celiacs, it is an immune disorder that can develop in people with the celiac gene (20-40% of people have the gene though) upon exposure to gluten. It is a very specific response and they are very close to developing a vaccination... that can treat and prevent it. They are also close to finalising a blood test that works after only 3 days of bread challenge! So you and your kids will have much better testing, treatment and prevention options very soon! Food for thought!

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Minouki,

I am in a somewhat similar situation. I have been GF since the end of July and while gastro symptoms have improved I have some other weird symptoms that could be related to Celiac (but also a host of other things). My doctor ordered the celiac blood test, not knowing that I have been GF. I know that the test will likly come back negative (and even when eating gluten, the test has a high rate of false negatives!). I didn't know if I should restart gluten just to get an accurate test result (for the blood test it has to be 1-4 slices of bread per day dor 2 weeks) and didn't want to undo any healingi have made So I decided to have the blood work without adding in gluten again as it was included in the panel that needed to get done already.

The benefits, to me, for having a diagnosis would be that I think I would be more strict and conscientious about gluten esp in restaurants and hidden sources Ike body products, make up etc. in addition, you must have the blood test and biopsy confirmation for Celiac to receive tax benefits on the additional costs of GF foods (in Canada). It would be nice to know I NEED to avoid it not just that I CHOOSE to.

In terms of your children, the blood test is not effective for under the age of 3. In addition, because Celiac is a progressive disease, you basically have to be having symptoms and damage before you can test for it UNLESS you get gene testing done. Gene testing can identify if you or your children carry the celiac genes or genes that mark for gluten sensitivity. This may be a better option for your kids.

If you choose to eat the bread before your challenge, do it for the full amount of time. My sister didn't do it long enough and as a result her test may not have been accurate either.

Good luck to you! :)

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Hello Tasha and Juzbo - First, thank you so much for your replies.

Second, I have now decided not to re-introduce gluten before my colonoscopy. I ate it (2-3 slices of bread per day) for four days and got terribly sick. Canker sores, yeast infection, itching skin, diarrhea, etc.. After those 4 days, I called my gastro and told him that I could not do this to myself. He agreed and said that I pretty much had the answer I was looking for. I have a positive blood test, a negative one and some pretty intense symptoms when I eat gluten. That's pretty much it for me.

I feel kind of relieved. I can now commit to eating a mostly Paleo diet (with wine and occasional rice) and move forward in my achievement of a healthier life.

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