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WhirledPeas
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Post by WhirledPeas »

Leah wrote: allergy tests...

Oh, and if you haven't gotten your thyroid checked recently, you should because your thinning, dry hair is a classic symptom of hypothyroidism. People who have MC have a 7 times greater chance of also having thyroid issues. Many of us here do ( including me). make sure your TSH test result is lower then 3.
Hi Leah,

It sure was good to get out of the house and hear some old timey music tonight. Knee slapping music. :-) Tomorrow another concert and maybe on Sunday a botanical garden. Just what I need!

Thyroid is tested via blood correct? I did have a blood test in the doctor's office on my first visit. I need to get a copy of the report for my files. I remember him mentioning wanting to check my thyroid, so I think it was okay. I'll double check. In the past I've had doctors check for that and I've never had it come up as abnormal.

In the last year my diet has become more restrictive due to more than usual (for me) diarrhea flareups and having more "other GI upsets" on a weekly basis. Always something! I used to have a D flareup every 2-3 months and then it became on average every 1-2 months sometimes more often than that. It takes so long to get my gut rested and back to eating "my normal" food. I have less time being in balance meaning less foods that are nutritious which I believe is the root of why my hair is acting the way it is. My body isn't getting what it needs from my present diet. Enough to get by, but not to thrive or feel healthy. I used to eat a lot of fruits and cooked veggies then it went to moderate amounts and now meager amounts for fear that I'll have more D.

Main diet is boneless, skinless chicken and turkey breast baked in apple juice and a tad of salt and Earth Balance margarine or marinated but I stopped that b/c of the gastritis. I'm cooking meat more often than buying plain deli turkey. I think the Boars Head low salt turkey wasn't ideal for the gastritis. Not bad, but not the best. White rice. Applesauce. Sometimes sweet potatoes and baked apples if I'm doing well and not needing to stick to "white stuff". White bread or multi-grain bread depending on how I'm feeling. Bananas. Saltines. Plain pasta or cereal with almond milk on occasion. When I'm up north which is only in the summer for a bit I get lobster at the market for cheap. I was so happy I was able to eat it last fall. I had it 2-3 times a week. I should try to have fresh fish more often, but it means planning ahead. I need to shake up my diet so I get more vitamins and minerals. One step at a time... Before this year, I used to red meat every so often and lots of low fat cheese. Just high fiber bread and produce would cause the D.

Besides thyroid and blood sugars (diabetes), are there any other tests to have to make sure no other autoimmune issue is going on? I get my blood tested annually for cholesterol and all the basic panels.

Another issue that I'm not sure if pertinent or not. I've had chronic dry eye for at least 6 years plus and also on and off have had allergic conjunctivitis. I was diagnosed with two different things by two different eye doctors, but I think the last one said A.C. and told me the other was misdiagnosed. Thankfully I haven't had it in a good while (it hurts and looks terrible), but in the past I was getting it every 3-4 months. It's what it sounds like, but it's related to allergies rather than the kind you would get at school as a kid.

I got a little long winded. I don't have anyone really to talk to about these things, so I can go on and on. LOL Thanks for listening. :-) I'm surprising myself at what I'm sharing on here. And to think I used to be so prim and proper. HA
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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Post by WhirledPeas »

Tex,

Food for thought! Interesting read. On another note... I've heard about a lot about "anti-inflammatory diets", but haven't really read up too much on them. I don't know if those diets correlate to any of this. I haven't paid much attention because I can't eat a lot of the fruits and veggies at the moment that they always say to eat. There's some PBS shows with various doctors selling their books and DVDs.
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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Post by WhirledPeas »

Mr. Fix It :)

Thank you for piping in and sharing your experiences with me. Yes, I am concerned about that as well after reading the literature on budesodine. I was told the same thing about Protonix. No problem to take it long term. We don't know for sure, but there's a chance my IBS turned into MC because of it or possibly I had MC to start with. Although my symptoms have been a long progression to where I'm at today. 15 years ago I'd get D from eating a rich meal out with wine and be fine in a day or so. I couldn't eat out and drink alcohol or I'd feel ill, so I would eat early and have a few beers later. This is ages ago before I ever even saw a doctor. I remember popping OTC antacids in the mid to late 1990s. 2001 and 2002 was when my life changed dramatically because of all these upper and lower GI issues came crashing down on me.

I know what triggers my gastritis lately even with my limited diet. I sometimes can eat certain foods and I'm fine, but lately gastritis hits me the next day. Up until recently I was able to eat chocolate chip cookies as a treat once a week if I wasn't in flare up mode and a daily decaf black tea or two, but with the burning in the belly I stopped it. I need to heal before I go back to my cuppa. I sure do miss it. Chamomile tea ain't the same.

I'll look into that zinc carnosine. Thanks! I think I just need to stick to a super bland diet for a while and do my best to mitigate stress which can make it worse. The doctor said it didn't look too bad. It amazes me how something that feels like battery acid in your stomach/throat can look moderate in an endoscopy. Grateful for that, but it makes me think how much worse it could be which is hard to fathom when your tummy is on fire...

Thanks for the welcome!
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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Post by WhirledPeas »

Hi Tex,

I got a little long winded in my previous replies. I'll try to keep it short. :)

I ordered the book last night. Tomorrow I see my GI doc at 2:45 p.m. I just finished writing down my questions and concerns. Any last minute questions to add? One of my concerns is to make sure there isn't any other autoimmune issue lurking. (The only ones I can think of are thyroid, diabetes, lupus, RA). I think thyroid and diabetes are tested via blood. I'll be getting a copy of my last blood test tomorrow to see what they tested for. He didn't mention anything, but it's good to see for myself.

I'll also be calling Enterolab to inquire about testing and insurance codes. It appears the only one that does the gluten GENE testing is "B". If that's the case, I want to do that one. On their info page, it appears they recommend for MC patients ... "B" and adding the "fat malabsorption test" if I read their recommendation right. For my purposes, do you think those two are the best for me? I remember you saying "B" was your preference. Curious about the other one.

Relating to income tax prep (and saving a bit of money), if your insurance doesn't cover all or part of the Enterolab testing costs, would a Rx be needed to use it as a medical deduction on your tax return? I know that is the case with massage therapy if you have a doctor's Rx for it. If you don't, it's not deductible.

Wish me luck! Thank you all for your kindness and support...
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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Post by Leah »

Keep us posted!... and i see you are still eating gluten. Why?!!!!!!!!!!!!!

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tex
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Post by tex »

Hi WhirledPeas,

Not everyone is interested in learning their DNA results, but I like to see which genes I have, related to gluten sensitivity. For one thing, it tells me whether or not I am at risk of celiac disease, which relates to the amount of small intestinal damage that might be present (or at risk). It also provides some insight into the risks to which other family members might be exposed, and some of these genes shed some light on additional health risks that might be associated. Of course, it's possible to add the DNA test to Panel A, also.

The fat malabsorption test is helpful for verifying the presence of small intestinal damage, and/or malabsorption problems. It's probably even more important for those of us who have one of the celiac genes, because we are presumably more vulnerable to small intestinal damage. I ordered that test after I had been on the GF diet for about three and a half years, and discovered that I still had a small to moderate amount of fat malabsorption. I wish that I had ordered the test early on, but back in those days, I wasn't even aware of the EnteroLab tests, unfortunately.

Most of us don't have enough medical expenses associated with the disease to justify taking the itemized deductions option on our tax return, but if you qualify, then I doubt that the IRS would question a lab test of that type, since you have a diagnosis of MC. If anyone is justified in deducting lab expenses for stool tests, it's someone who has MC.

I hope that you find the book to be very helpful. It contains the gist of what we've learned on this board, plus a lot of additional information.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by WhirledPeas »

Leah wrote:Keep us posted!... and i see you are still eating gluten. Why?!!!!!!!!!!!!!

Leah
You have to remember this all just happened for me in the last week and is very new to me. I am learning about gluten free products and finding substitutes in the last few days. My diet is very limited to fend off D flareups, so it is hard to go gluten free over night and be able to have "travel foods" during the day. I don't eat out anymore except one place that has one to go item that agrees with me. I've stopped eating gluten bread in the meantime. Doing the best that I can under the circumstances. I'll update under Tex's reply about how my doctor's appointment went today. Thanks for your concern. :)
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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Post by JFR »

There is certainly an adjustment time needed, both an emotional adjustment to a radical change in diet and a practical adjustment, what to eat both inside and outside the house and how to prepare it, but the bottom line for most of us is that if we don't cut out at least gluten 100% we will never achieve remission. I found it easier to simply stop eating gluten containing foods without trying to find substitutes. When I stick with simple single ingredient foods, I know what is going into my body and the chance of inadvertently ingesting gluten (and for me dairy, soy and eggs and others) is close to zero. The first step in being able to eat this way is believing that gluten containing foods (and dairy and soy and eggs too perhaps) is harmful just like ingesting arsenic is harmful. What worked for me was to remove the big 4 (gluten, dairy, soy and eggs) immediately and then get the Enterolab test which then reinforced what I was already doing plus added some more foods to my do not eat list. If you keep working at this I am sure you will figure out for yourself how you need to eat to feel better. The experience of virtually all the people on this forum is that you will have to avoid gluten 100%.

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Post by tex »

To add to this line of thought, I'd like to point out that before I eliminated gluten from my diet, I started keeping a food/reaction diary. After keeping detailed records for several months, and studying them, I couldn't for the life of me, detect any problem with eating gluten. Instead, it seemed that I reacted to anything and everything, without rhyme or reason.

Once I permanently removed gluten from my diet though, after a while, I could begin to see reaction patterns related to certain other foods (such as dairy and corn), and eventually it all began to make sense. Gluten can be a very insidious enemy.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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I've been really busy, so haven't had the time to follow up with posting about my post-doctor visit update on here. Quick note for now. It went better than I expected. He was kind and supportive of what I wanted to do. I told him I needed help with finding a more balanced diet with my various GI issues (LC, gastritis, IBS, GERD). He will be referring me to the nutritionist in his practice to help me. I got Wayne's book and plan to read it on my upcoming vacation too.

I told him I wanted to wait on taking the Budesonide and I wanted to explore a gluten free diet and that he had originally mentioned that I could consider getting tested for the celiac gene. He said I could have the Prometheus celiac genetics blood test in his office. I have to call to see if my insurance will cover any of it since it's $650. Any thoughts on the effectiveness of that test?

I showed him the Enterolab list of tests. He said he couldn't recommend these tests, but would be willing to read the results and help me figure out what they mean if I chose to have them done.

Lately the gastritis has been more of an issue for me than LC or IBS. Very painful despite the endoscopy/biopsy showing it's not a bad case of it. Does anyone else on here suffer from gastritis despite a bland diet and eliminating alcohol, caffeine, chocolate, raw foods, etc.? If so, what has helped you heal and feel better during an episode? With me, it comes and goes. Two days okay and then two days of burning in the stomach and throat. Hard to concentrate when it flares up. I can't find a rhyme or reason to it when I eat bland and avoid my "treats" (cookies with chocolate in them).

Thanks, check in later tonight!
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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I told him I wanted to wait on taking the Budesonide and I wanted to explore a gluten free diet and that he had originally mentioned that I could consider getting tested for the celiac gene. He said I could have the Prometheus celiac genetics blood test in his office. I have to call to see if my insurance will cover any of it since it's $650. Any thoughts on the effectiveness of that test?
You can have a blood test for HLA DQ genes done by a variety of labs that participate with your insurance, not just Prometheus. If insurance won't cover it, you're better off getting the $150 gene test from Enterolab. I had the blood test after my Enterolab cheek swab gene test and they both agreed.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
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WhirledPeas
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Post by WhirledPeas »

Zizzle,

Thanks for your quick reply! So the Enterolab celiac gene test is done via a cheek swab? Good to know that. I guess all the stool sample tests are related to food intolerances through Enterolab. Do I need to find out a code from Prometheus before calling my insurance company or will they be able to look it up by just saying "celiac gene testing"?
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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Post by WhirledPeas »

I googled HLA DQ to read up on it since I wasn't familiar with that terminology. I found this that I thought may be of interest to someone. It's a long, hard read. I scanned it for things that jumped out at me.

Does this gene test tell you anything beyond which genes you carry related to celiac or does it give you a full spectrum of other autoimmune genes that you may carry? The second link lists quite a number of them... This is all very new to me....

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2175211/

http://en.wikipedia.org/wiki/Human_leukocyte_antigen
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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Post by tex »

I didn't have time to read the articles at your links (I've almost surely read them in the past), but I can tell you that the Prometheus test will only test for the two most common celiac genes, whereas EnteroLab uses the test developed by the Red Cross, and it tests for the celiac genes plus any other gluten sensitive genes that you might have.

You will probably need a code, because Prometheus charges 3 or 4 times as much as Enterolab for their gene test, even though they provide much less information in the results.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by WhirledPeas »

Hi Tex,

I just want to be sure I've got this straight... The Prometheus gene test is a blood test whereas The Enterolab gene test is a cheek swab. Is this particular gene test that Enterolab offers medically accepted by GI doctors for identifying gluten sensitive genes? Just wondering if my doctor will "value" the results the same as he would the blood test. Just want to know what's what.

I've been doing more shopping homework and have been finding more gluten free, easy to digest snacks. I found some dehydrated organic apples (only apple no oil) at Target that agreed with me. Also, tamari sesame seed rice cakes. Not too exciting, but they do the trick and aren't bad tasting. Very slightly seasoned and salted, so easy on my gastritis. Bought some almond and rice flour chips tonight too test out in a few days. Bought a bag of quinoa. Now to figure out what to do with it. :-) I thought I'd add raisins, almonds, olive oil and salt. Not sure what else I could add that is safe for me. Lately I've been able to eat small amounts of nuts (pecans) without any problem.

After tasting a loaf of GF bread, I am entertaining the thought of getting a bread machine and finding GF bread recipes. I love bread so much. It's a hardship giving up the one thing that has been my safe food for 11 years. I need to have yummier bread than Udi's or Rudi's! :-)
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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