New To The Forum

[Renee Michelle]

Hi everyone, I am Ren

[Marilyn R]

Hi Renee, and weldome to the forum, and a new way of life! Wish you well.

[Marilyn R]

Oops, I meant to welcome you to the forum, not "weldome" you, and couldn't figure out how to edit. Soorry abou that!

[fartoofat]

Hi Renee, I am Michelle from Perth WEstern Australia and am also new to the forum. I am same as you are. Gluten, lactose and I am lucky enough to have hit the jackpot with rheumatoid arthritis as well. I was diagnosed with celiac about 1 year ago now. I was so sick and dizzy all the time and the doctors thought I was nuts. Got sick of telling people something was wrong. Unfortunately, it took about 6 months on a very strict gluten free dairy free diet before I felt well again. Now everything is basically back to normal although a few triggers still for irritable bowel. Unfortunately, I trusted my mother to make a gluten free cabbage salad over christmas and she repeated the recipe for me to take to my mother inlaws for new years. Between all the helpings I had and leftovers next days for lunch, I was in heaven until a couple of days ago and now I am so ill again. All the previous ailments along with tremors and swollen lips. Just found out she uses a whole pack of wheat noodles in every salad so now I have to ride it out again probably for a week or two. Its never easy but I find that a tiny slip of unknown gluten is not a real drama but obviously 5 or 6 helpings are. I hope you make sure you get some good books on the topic. It helped me a lot. Most things that I ate before, I could modify to suit gluten-free but I really miss cheese. Vegetarian cheese is horrible. Good luck with everything. I hope all goes smoothly for you now you are diagnosed. Regards Michelle

[Zepp15]

Hi

I have no idea how this forum works, so I apologise in advance if I'm posting in the wrong place or if I offend, it is not intentional.  I will also apologise for the length.

I have been a diagnosed lactose intollerant "forever," and was diagnosed with severe Gastroparisis and type 2 diabeties several years back.  Although not officially diagnosed despite taking individual super charged supplements, bloods consistently show malabsorbsion of several nutrients (since forever, but I hover just below/above normal) and can't get a doctor to listen because atypical is too hard.  I get the basic nutrition lecture and "that'll fix things."

I have a very classic Ceoliac extremist vegetarian almost vegan friend whose diatry choices I respect, but doesn't get I am craving gluten (or how I can eat meat etc.)  After bloods and a gastro endoscope and scopes everywhere, my bowel "looked suspicious."  This was 6 months ago when Dr Gastro put me on gluten free.  I still crave my old classic diet of gluten, gluten and more gluten.  I have only had the small slip ups since replacing gluten with cardboard-gluten free alternatives.  The box says "gluten free," I'm sure the box is gluten free LOL.

Before I went gluten free, I was without classic symptoms.  I have gained heaps of weight since going gluten free and it is soooo expensive.

I have tolerated the occasional "may contain gluten" or environments where cross contanimination is probable.  I am still learning, making mistakes and educating.  Family don't understand, I was fine before, so how can I suddenly be Ceoliac, tne doctor must have it wrong.

So after 6months, back to Dr Gastro and repeat bloods.  Apparently I have the hereditary form of Ceoliac, but not classical.  Dr Gastro wants gluten reintroduced... yay!  So I thought.  A crumpet can't hurt.  Ummmm.

I have read many 'slip-up' posts, but can't find stuff on reintroduction.  So I had my crumpet - and I loved it.... until about an hour later, (I will spare details,) but have been doubled up in pain and many, many, violent BMs  .

I am tempted to go back gluten free, but want to know if this is going to pass.

Dr Gastro has given me a reintroduction programme with increasing - yummmy, but not if I am not going to leave the bathroom.  In 3 months he wants me drinking 2ltrs (about 4 pints) of 100% barley water daily (made from bring barley, bring to the boil in a large pot of water and let it cool before straining off the water, drink hot or cold) and eating a very high gluten diet (higher than pre gluten free.)

The first week of gluten free was hard, but physically it got easier.  Psychologically I still crave my favourite bread, especially as the bakery is outside the supermarket.

For anybody who has gone on a reintroduce diet, did this pass?  How long did you stick at it?  I can't get to see Dr Gastro for another month.

Appreciate any comments

Thank you.

Edited September 7, 2018 by Zepp15
significant typo.

[Ennis-TX]

2 hours ago, Zepp15 said:

Hi

I have no idea how this forum works, so I apologise in advance if I'm posting in the wrong place or if I offend, it is not intentional.  I will also apologise for the length.

I have been a diagnosed lactose intollerant "forever," and was diagnosed with severe Gastroparisis and type 2 diabeties several years back.  Although not officially diagnosed despite taking individual super charged supplements, bloods consistently show malabsorbsion of several nutrients (since forever, but I hover just below/above normal) and can't get a doctor to listen because atypical is too hard.  I get the basic nutrition lecture and "that'll fix things."

I have a very classic Ceoliac extremist vegetarian almost vegan friend whose diatry choices I respect, but doesn't get I am craving gluten (or how I can eat meat etc.)  After bloods and a gastro endoscope and scopes everywhere, my bowel "looked suspicious."  This was 6 months ago when Dr Gastro put me on gluten free.  I still crave my old classic diet of gluten, gluten and more gluten.  I have only had the small slip ups since replacing gluten with cardboard-gluten free alternatives.  The box says "gluten free," I'm sure the box is gluten free LOL.

Before I went gluten free, I was without classic symptoms.  I have gained heaps of weight since going gluten free and it is soooo expensive.

I have tolerated the occasional "may contain gluten" or environments where cross contanimination is probable.  I am still learning, making mistakes and educating.  Family don't understand, I was fine before, so how can I suddenly be Ceoliac, tne doctor must have it wrong.

So after 6months, back to Dr Gastro and repeat bloods.  Apparently I have the hereditary form of Ceoliac, but not classical.  Dr Gastro wants gluten reintroduced... yay!  So I thought.  A crumpet can't hurt.  Ummmm.

I have read many 'slip-up' posts, but can't find stuff on reintroduction.  So I had my crumpet - and I loved it.... until about an hour later, (I will spare details,) but have been doubled up in pain and many, many, violent BMs  .

I am tempted to go back gluten free, but want to know if this is going to pass.

Dr Gastro has given me a reintroduction programme with increasing - yummmy, but not if I am not going to leave the bathroom.  In 3 months he wants me drinking 2ltrs (about 4 pints) of 100% barley water daily (made from bring barley, bring to the boil in a large pot of water and let it cool before straining off the water, drink hot or cold) and eating a very high gluten diet (higher than pre gluten free.)

The first week of gluten free was hard, but physically it got easier.  Psychologically I still crave my favourite bread, especially as the bakery is outside the supermarket.

For anybody who has gone on a reintroduce diet, did this pass?  How long did you stick at it?  I can't get to see Dr Gastro for another month.

Appreciate any comments

Thank you.

Well, first you a bit mistaken on a few points...all celiac is genetic. The gene can be dormant and activate anytime in life. Most find a sudden illness, pregnancy, drinking binge, etc. can shock the immune system and activate the gene. Then you life long can not eat gluten without your immune system attacking your intestines...sometimes other things like nervous system (like me)

Your doctor sounds half like a idiot....your supposed to do ALL testing on a gluten diet, IE eating gluten 1 slice of bread at least every day. The blood test then a endoscope with BIOPSIES  where they check for damage under a microscope.

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Reintroduction.....almost always WAY worse. You spent years perhaps with your immune system fighting all worn out trying to kill the gluten while puttering along....now it has had time to rest up and strike full force. You were probably half immune to the pain before as it slowly came on then was present for years maybe. Now its gone away and combo with the full force of your immune system attacking ....your going to feel the full force of the symptoms.

Gluten free food......for frack sake give up the processed cardboard snacks, cookies, breads, etc.  Gluten free processed foods are mostly starch laden carb bombs that are going to mess with your diabetes etc. Treat the processed stuff like you cookies...once a week.
Your going to save money, health, and probably your life moving to whole foods only, IE veggies, meat, squash perhaps some rice or potatoes in moderation depending on how it effects your blood sugar. We always suggest whole foods for the first few weeks. Think eggs, omelettes, soups, stews, chili (easy on spices). fresh hash browns, stir fry, chicken bakes, baked fish, crock pot meals.

Now after a month perhaps try a gluten free bread again but look for one less starchy and more nuts/seed flour based to help manage blood sugar. I have several recipes I use in my bakery this way that my diabetic customers find do not spike blood sugar.

Personally, I have it a bit worse, I have Celiac (no gluten), Ulcerative Colitis (flares to carbs, sugars, spices, dairy, soy), Allergic to corn, whey, Intolerance to lactose, soy, and a food sensitivity issues to peanuts and several other random foods), I also had gluten ataxia damage my nervous system and mess up the way my pancreas works so I can not eat much animal meat or fats.
I live on egg whites, nuts, seeds, avocados, leafy greens, vegan nut based cheeses, small amounts of fish/crab, and some other things along with supplements.

PS I am not a doctor but I have studied nutrition, and worked in the food industry as a chef, and baker with this disease for while. These are just some things from experience and stuff I have learned.

OH where do you live so we can see about suggesting places to eat, foods to buy etc. I assume by wording your UK.

[ravenwoodglass]

Why is your doctor having you reintroduce gluten when it sounds like you had positive blood work and endo? Whatever the reason your body is telling you in no uncertain terms that it doesn't want you eating it.

[sheronlyn]

On 9/7/2018 at 10:25 PM, Zepp15 said:

Hi

I have no idea how this forum works, so I apologise in advance if I'm posting in the wrong place or if I offend, it is not intentional.  I will also apologise for the length.

I have been a diagnosed lactose intollerant "forever," and was diagnosed with severe Gastroparisis and type 2 diabeties several years back.  Although not officially diagnosed despite taking individual super charged supplements, bloods consistently show malabsorbsion of several nutrients (since forever, but I hover just below/above normal) and can't get a doctor to listen because atypical is too hard.  I get the basic nutrition lecture and "that'll fix things."

I have a very classic Ceoliac extremist vegetarian almost vegan friend whose diatry choices I respect, but doesn't get I am craving gluten (or how I can eat meat etc.)  After bloods and a gastro endoscope and scopes everywhere, my bowel "looked suspicious."  This was 6 months ago when Dr Gastro put me on gluten free.  I still crave my old classic diet of gluten, gluten and more gluten.  I have only had the small slip ups since replacing gluten with cardboard-gluten free alternatives.  The box says "gluten free," I'm sure the box is gluten free LOL.

Before I went gluten free, I was without classic symptoms.  I have gained heaps of weight since going gluten free and it is soooo expensive.

I have tolerated the occasional "may contain gluten" or environments where cross contanimination is probable.  I am still learning, making mistakes and educating.  Family don't understand, I was fine before, so how can I suddenly be Ceoliac, tne doctor must have it wrong.

So after 6months, back to Dr Gastro and repeat bloods.  Apparently I have the hereditary form of Ceoliac, but not classical.  Dr Gastro wants gluten reintroduced... yay!  So I thought.  A crumpet can't hurt.  Ummmm.

I have read many 'slip-up' posts, but can't find stuff on reintroduction.  So I had my crumpet - and I loved it.... until about an hour later, (I will spare details,) but have been doubled up in pain and many, many, violent BMs  .

I am tempted to go back gluten free, but want to know if this is going to pass.

Dr Gastro has given me a reintroduction programme with increasing - yummmy, but not if I am not going to leave the bathroom.  In 3 months he wants me drinking 2ltrs (about 4 pints) of 100% barley water daily (made from bring barley, bring to the boil in a large pot of water and let it cool before straining off the water, drink hot or cold) and eating a very high gluten diet (higher than pre gluten free.)

The first week of gluten free was hard, but physically it got easier.  Psychologically I still crave my favourite bread, especially as the bakery is outside the supermarket.

For anybody who has gone on a reintroduce diet, did this pass?  How long did you stick at it?  I can't get to see Dr Gastro for another month.

Appreciate any comments

Thank you.

Zepp 15. I am astounded that a Gastroenterologist who says you have the celiac gene tells you to reintroduce gluten in any form let alone by drinking gallons of barley water. The mind boggles! Getting properly diagnosed with celiacs and/or non celiac gluten sensitivity with someone who understands the whole complexity is a nightmare in any country. Alot of the testings come back false negative, alot of people dont have obvious symptoms or they have had them so long they become something they live around but damage to organs and all bodily systems will be occurring and show up as a multitude of different diseases and health complaints where the medical fraternity will just deal with symptoms with drugs and not get to the actual cause. If you have problems with gluten then stop it and feel improved in any way then just stay off it. Going back to it with that reaction says it all. Forget what these "specialists" and doctors say,  most of them havent a clue about the subject. Look out for yourself, your the one living with it now and illness will forever be with you  if you dont listen to your own body. Take control!