Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


em80

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,555
    • Most Online (within 30 mins)
      7,748

    Laura65
    Newest Member
    Laura65
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.