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Chase Corin

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Chase Corin Newbie

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?


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hexon Rookie

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?

I actually like some of the gluten-free breads better than their gluten counterparts. Try glutino or Udi's bread. Keep them in the freezer and toast them to thaw them out. I'll go ahead and tell you now that you may just want to microwave it or toast it in a skillet since your toaster likely is going to cross contaminate any gluten-free stuff you put into it. Progresso has a cream of mushroom soup that doesn't have any gluten in the ingredients.

I can totally relate with the chronic D. I gave up gluten mid November of last year and finally saw some relief from the cramping and D (until recently, where I seem to react to anything). I'll go ahead and tell you though that once you cut out gluten it makes testing for celiac/gluten intolerance very difficult if you want a formal diagnosis. I got a negative celiac blood test anyways, which is pretty common, and I don't particularly care which term defines my issues. I just know it's worked pretty well so far.

mushroom Proficient

Yes, as the pp says, if you want a celiac diagnosis you have to continue to eat gluten up until the time of testing. If you resume eating gluten now, one week would not make any difference; two weeks and the results would not be necessarily valid. So get back on the gluten and tell your doctor that you NEED to be tested for celiac now because you are going to quit eating gluten because you can't stand it any more. Tell him about yuur recent weight loss and your year of diarrhea. Have you ever had the celiac blood tests or just the endos? These are the blood tests you should have:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If the blood testing is postive they will probably want to do another endo, for which you should also continue eating gluten.

Incidentally, has anyone ever told you that a gluten free diet is helpful for Crohn's also?

By the way, welcome to the board. Ask any questions that come to mind. :)

AVR1962 Collaborator

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?

Is there anyway you could see a new doc? Having already been diagnosed with Crohn's it would lead me to think this very possibily could be celiac. Bad thing about testing is it is not accurate and a person who tests with negative lab results could retest a year later with positive results. If you want to persue an actual diagnosis you would have to continue to consume gluten. However, if the diagnosis is not as important you can always try a gluten-free diet and see if there you find any improvement in your health issues.

You would really be surprised how soon you give up the bread cravings once your body is detoxed from glutens. I was also a big carb eater, loved my cinnamon rolls and tortillas. Now, I don't even find gluten-free bread appealing and it is not because of the taste, it's just that I no longer have those cravings. There are so many foods to eat and so many that are much more beneficial for our bodies. Once you rule out gluten, it really is not all that hard to live without. I do know however, what you are saying, I felt the same. I could not imagibne a whole lifetime of eating no glutens but really it is not as hard as I thought it would be.

ravenwoodglass Mentor

You have gotten some great advice alreay. The only thing I want to add is that if your D is waking you up at night be sure to mention that to your doctor. IBS does not wake folks out of sleep according to my GI. If that is happening to you that rules out it being just IBS.

Chase Corin Newbie

You have gotten some great advice alreay. The only thing I want to add is that if your D is waking you up at night be sure to mention that to your doctor. IBS does not wake folks out of sleep according to my GI. If that is happening to you that rules out it being just IBS.

My D does wake me up in the middle of the night so I will definately mention that to my doctor.

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      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
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