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Help?! For Post-Diagnosis: Mayo Vs Columbia Vs Chicago, Etc. - How Do You Choose Which Specialist To Visit?


em80

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Lady Eowyn Apprentice

I have not managed to eat out anywhere yet and not feel glutened the next day.

Our local Italian restaurant does gluten free people in a special pan ( :) ) reserved for gluten free and I have salad (olive oil only) but it still gets me every time :( .

I think there is just too much gluten going on in most kitchens and of course, flour in the air, etc must tend to get everywhere. Realistically, a busy commercial kitchen is not likely to have sensitive cc issues under complete control!

 

As for laundry detergent - a couple of years ago I changed ours from a general one (various makes) to a environmentally friendly, no harsh chemicals, etc one and am certain I can tell a difference, especially with underwear and bedding - it's just different and makes your body more at ease  :ph34r:  no kidding!! Not suggesting this is anything to do with gluten, but on a chemical front - it makes you think.


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Lady Eowyn Apprentice

Just to apologise ...

I thought that I was responding at the bottom of page 1 - so now I look completely off topic.

I think I'm losing the plot today :blink: .

designerstubble Enthusiast

To get your guts to play nicely you have to treat them nicely. High quality probiotics; digestive enzymes; L-glutamine, all will help them out, to repopulate your gut with the good guys, to digest your food, and to promote healing. (Providing you have killed off your SIBO :ph34r: )

Thanks. What constitutes a high quality probio? I am taking one but have no idea if its good or not?! Also what kind of food repopulates good bacteria? I once heard that green juices are good start? Though cant find any info on that! Will look into the digestive enzymes too.

I have no idea if I need any of this! All I know is that my 'movements' are still not right all the time, and my gi seems to make too much noise sometimes! I am eating a lot of veg though so who knows! I almost wish they could take another look inside to tell me if I am on track or not. Ugh. So frustrating.

Thanks though

designerstubble Enthusiast

I have not managed to eat out anywhere yet and not feel glutened the next day.

Our local Italian restaurant does gluten free people in a special pan ( :) ) reserved for gluten free and I have salad (olive oil only) but it still gets me every time :( .

I think there is just too much gluten going on in most kitchens and of course, flour in the air, etc must tend to get everywhere. Realistically, a busy commercial kitchen is not likely to have sensitive cc issues under complete control!

As for laundry detergent - a couple of years ago I changed ours from a general one (various makes) to a environmentally friendly, no harsh chemicals, etc one and am certain I can tell a difference, especially with underwear and bedding - it's just different and makes your body more at ease :ph34r: no kidding!! Not suggesting this is anything to do with gluten, but on a chemical front - it makes you think.

I have not eaten out once yet. In 5 months. I'm far too scared. The UK are too behind the times with celiac for me to trust. I don't even trust celiac UK website much for their info... Very basic.

Interesting about the bed sheets. And laundry... Might give that a go... I am becoming hateful of chemicals these days and anything 'manufactured'!

Hmmmm you know, I am wondering if a baked potato might be safe for me to eat out? I could leave the skin maybe? Anyway, I'm rambling off on one now!!

:D

designerstubble Enthusiast

Just to apologise ...

I thought that I was responding at the bottom of page 1 - so now I look completely off topic.

I think I'm losing the plot today :blink: .

!! Glad I'm not the only one who does stuff like that ;)
Bubba's Mom Enthusiast

Thanks. What constitutes a high quality probio? I am taking one but have no idea if its good or not?! Also what kind of food repopulates good bacteria? I once heard that green juices are good start? Though cant find any info on that! Will look into the digestive enzymes too.

I have no idea if I need any of this! All I know is that my 'movements' are still not right all the time, and my gi seems to make too much noise sometimes! I am eating a lot of veg though so who knows! I almost wish they could take another look inside to tell me if I am on track or not. Ugh. So frustrating.

Thanks though

I think a lot of the probiotics are the same?  I was told at the Mayo Clinic to take one that contains lactobacilus acudophilos to keep yeast in check.  Other than that, I'd say switch brands from time to time to get a balance of various strains.  Some contain soy or dairy and I wouldn't recommend those. 

 

Probiotic foods include those foods that are fermented.  Kombucha tea, sour kraut, kimchee, keffir, Greek style yogurts that aren't full of sugar (if you tolerate dairy).

 

Green juices help replenish your digestive enzymes.  They might help if it seems like you are digesting things well.  If you are still having issues, I wouldn't overdo the fibrous veggies.  Be sure that they agree with you.  When healing some foods can irritate your system.

 

If you are having growly noises in your tummy it usually means your system is struggling with digesting..usually carbs.  A digestive enzyme supplement can really help.  I wouldn't take it with absolutely everything you eat, but if you are eating beans, peas, fatty foods, fibrous foods, they'd be a lot of help.

 

Healing can be a slow process.  We stop eating gluten and think we are magically going to feel great.  The truth is..it takes some time.  You will have "up" days and "down" days.  Keep a food/symptom log and if something doesn't agree with you, omit it, or limit it for a while. If you have a set-back, tell yourself these things happen, and try to do better. :unsure:

designerstubble Enthusiast

I think a lot of the probiotics are the same? I was told at the Mayo Clinic to take one that contains lactobacilus acudophilos to keep yeast in check. Other than that, I'd say switch brands from time to time to get a balance of various strains. Some contain soy or dairy and I wouldn't recommend those.

Probiotic foods include those foods that are fermented. Kombucha tea, sour kraut, kimchee, keffir, Greek style yogurts that aren't full of sugar (if you tolerate dairy).

Green juices help replenish your digestive enzymes. They might help if it seems like you are digesting things well. If you are still having issues, I wouldn't overdo the fibrous veggies. Be sure that they agree with you. When healing some foods can irritate your system.

If you are having growly noises in your tummy it usually means your system is struggling with digesting..usually carbs. A digestive enzyme supplement can really help. I wouldn't take it with absolutely everything you eat, but if you are eating beans, peas, fatty foods, fibrous foods, they'd be a lot of help.

Healing can be a slow process. We stop eating gluten and think we are magically going to feel great. The truth is..it takes some time. You will have "up" days and "down" days. Keep a food/symptom log and if something doesn't agree with you, omit it, or limit it for a while. If you have a set-back, tell yourself these things happen, and try to do better. :unsure:

Thanks bubbasmom, that was really useful info. I will look for a probio containing that. I don't think mine does. I will start my food diary again. I stopped it a few weeks ago as I was kinda told not to bother (ie. I was being premature keeping one) but with hindsight it did help. In 4 months it helped me figure out some of my allergies and intolerances. Albeit now I'm stuck on a very restricted diet :( but! Onwards and upwards. Advice and help greatly appreciated :) you guys rock... Thanks


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Bubba's Mom Enthusiast

Thanks bubbasmom, that was really useful info. I will look for a probio containing that. I don't think mine does. I will start my food diary again. I stopped it a few weeks ago as I was kinda told not to bother (ie. I was being premature keeping one) but with hindsight it did help. In 4 months it helped me figure out some of my allergies and intolerances. Albeit now I'm stuck on a very restricted diet :( but! Onwards and upwards. Advice and help greatly appreciated :) you guys rock... Thanks

I was first DXed in July 2011.  I started keeping a food log when going gluten-free didn't stop a lot of my weird symptoms and just kept it up out of habit.  It's really helpful in figuring out some of the odd intolerances.  Just last week I made split pea soup and found I was very depressed the day after I ate it.  Skipped a couple of days and had it for lunch and got the same symptoms.  While not life threatening or anything, it was interesting to make the connection.  Without the log I don't think I would have made the connection?

 

I totally get how hard it is to live on a resticted diet.  I basically eat Paleo, except I can't have eggs now (because the winter feed has soy and it comes through to the egg) or any dairy.  I limit tomatoes and peppers because I know they can be irritating to my system.

 

Oh well...it won't be forever?  We'll get ourselves healed and straightened out and then we can start adding things back! :D

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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