HavaneseMom

I have heard mixed information regarding whether or not they can see damage too.

My doctor did tell me that he could see the damage as soon as I awoke from sedation after my endoscopy and sent me out the door that day with a celiac diagnosis. I didn't want to believe that I had celiac and asked him how he could tell that I had it visually just from my endoscopy. He showed me a picture of the inside of my small intestine that he had taken and said that the tissue should be smooth and then showed me that mine had a cobbled texture like a brick road. Again not wanting to believe him, I asked how sure he could be from just the visual images and he said 99.9%. My biopsies did come back positive as well.

So, based on my experience, it could be possible that your doctor saw a damaged area and took the one biopsy from there, but it would have been nice if he had taken the recommended 6 for sure.

FAKE TWINKIES:::::::: drum roll  please.......

 

cake:

1/2 c butter  or oleo

1 1/2 c  sugar

 

3 large  eggs

1 1/2 tsp  real  vanilla

 

1 1/4 c authenic  food  super  fine  brown rice flour

 

1/2 c potato  starch

 

1/4  c  tapioca  starch

 

3 1/2  tsp baking  powder

 

2 tsp  xanthan gum

 

1 tsp  salt

 

1 c  milk

 

Cream  butter/ sugar; add  eggs  & vanilla, mix well...  combine  in separate  bowl all the  dry ingredients &  whisk  together.... add  the  milk & the  dry ingredients alternately to the  cream mixture. Whip  until  fluffy. 

bake 350  for 25-30

cool.

 

make  sure  all  ingredients  are gluten-free!!!!!!!!!

 

You  can use  any  filling you like  but  I love  the  Todd Wilber  secret  recipe for the filling... it is  on  his   clone site.....

 

The  twinkie  pans  I use  are  from Bed Bath & Beyond but  now  days  they  can be  found  almost  anywhere... I bought  two pans  so I  could  bake  them  all at once.......

 

ENJOY.....

I can't wait to try these. Thanks for sharing!

Anna's  breads  can be made in a bread  machine  or  a pan.... We & even the kids  love  the  bread.... it  is not  hard  at  all... I  reduce  the  water  by  2-3  TBSP  &  it  doesn't   sink in the top  then.....

Her  banana  bread  & pumpkin bread  are  very good  as well....

If  you buy a bread  machine  make  sure  it has  a  heavy duty  motor... I  have  a  Zo...  & love  it  but  many have  the  breadmaker  one  & like it  too....

When  you make  homemade  bread  I  bake  , slice  & then freeze  putting  a piece  of  wax  paper between each slice  so  we  can take out  1 slice  or  several  & not  waste  the rest..

If  you check  out  the  Living  Without  site  they have  many bread recipes  that are  good... I just  make & eat it  & don't  look  at  carbs,  & such  ....

I'm not  sure  who  would  have  ready made  low  fat  bread.....

  

I just done  a  bit  of  scouting  around.... Schar bread  is low  fat... I have  ate their  bread...

Julian  Bakery   is  another  but  I never  had that before.....

 

hth

Thanks Mamaw!

I will look in to both of those pre-made breads for him, but I am really interested in baking my own now. The breads you mentioned sound really yummy and the husband really perked up when I mentioned I might bake him some bread.

Can you tell me more about your maker? I looked up Zo, and the brand Zojirushi came up. Is that the one you have? There are a few models on amazon right now. Do you know what model you have? Sorry for all of the questions, but they seem like a bit of an investment, so just I want to make sure I order the right thing.

Thanks again

Wow! There is actually a name for the phobia and it's common. I never would have guessed that.

I'm glad to hear you don't throw up from gluten GluFree4Me. I was starting to think it was just part of the process for everyone when they get glutened.

I did learn from my minor glutening last week that I should not eat a regular sized meal for a few days after. I had a decent sized lunch on day two and that was a big mistake. I really came close to getting sick from that. I will definitely eat small meals for a few days after a accidental gluten exposure from now on. Thanks for the advice.

Thanks for the tip on Anna's Breads mamaw!

It looks like her original mix is fat free, I would just have to find a low fat substitute for oil and use egg beaters when I make it. I hadn't thought about making a mix - I'm not much of a baker as of yet, but could learn. I was kind of hoping for a quick fix, like something pre-made and frozen. It would be worth the extra work to get the gluten filled bread out of my house if I have to make the gluten free bread myself though. I could probably get myself a new bread maker out of this deal too . Who knows, it could be fun to start baking breads.

Hi Everyone,

 

I am wondering if anyone knows of any low fat gluten free pre-made breads or rolls?

My husband is willing to eat gluten free at home and likes to have bread with most meals. He is on a very low fat diet for health reasons, and I am having a hard time finding low fat gluten free breads or rolls for him. I am looking for breads under 1.5 grams of fat per serving of 2 slices, or per roll. Are there any low fat eaters out there who know of any very low fat bread products? I am surprised to find out that gluten free breads have so much more fat in them then gluten filled breads. I would really love to get those gluten filled bread crumbs out of the house for good though.

 

Thanks in advance!

Thanks so much for the replies and the helpful tips.

I'm glad to hear it doesn't happen to everyone. I'm guessing if it does happen, that it won't be as horrible as I am making it out to be in my head. I understand what you mean about it getting rid of the poison, 1desperateladysaved. There have been so many times before my diagnosis where I probably would have felt much better if I had thrown up. I can see how if I have a bad accidental glutening that it could provide some relief in the long run. Sorry to hear you had that bad reaction this past week.

Hi Everyone,

I am very embarrassed to ask this question, but I know this is the best place to ask embarrassing Celiac question, so thanks in advance.

I have read lots of post about people throwing up violently when glutened. Does this happen to everyone?

I have a huge fear about this. The last time I threw up was about 20 years ago from what I believe was alcohol poisoning. Before that, maybe three times that I can remember as a child when I was sick. I spent years nauseous and feeling like I was on the verge of throwing up, but never did. So throwing up is a foreign idea to me and actually quite a scary thought.

I just had my first obvious glutening a week ago. I have been home cooking and feeling great, but was in a hurry and ate a Amy's "gluten free" Cheese Enchilada Meal. I have read about lots of people reacting to Amy's and now I really believe it. I had D and was really nauseous and felt overfull and like I was going to throw up for a few days just from whatever trace amounts were in that meal. I am guessing reactions vary from time to time depending on the amount of contamination. So, does everyone throw up at some point from a accidental glutening?

Thanks! (and sorry for the unpleasant subject matter)

Thank you so much for this bit of hope. My doctor told me that since I had such minimal damage to my intestines (she said we caught the celiac in it's early stages) that I would get better within about 2 months tops. It's 4 months later and I feel worse even though I'm strictly gluten free, dairy free, and grain free. I've looked into FODMAPS recently, as well as the SCD diet. Do you know anything about SCD? And why is it do you think that you felt the worse between 3 1/2 to 5 1/2 months? Because I think I started feeling even worse after around month 3 of being gluten free. I feel so beyond hopeless.

I'm glad to hear you have a little hope. I think you will feel much better if you keep doing what you are doing and give it a little more time. Your doctor shouldn't have told you that you would feel better in 2 months, because there is no way to predict that, and it set you up for disappointment when it didn't happen. Everyone's body heals and a different rate.

You asked why I thought I had that period of time when I felt worse at 3 1/2 to 5 1/2 months and I have no idea what caused that for sure. I was not eating out and was eating only a select few processed foods and am confident I was eating gluten free, like you are. It was very frustrating, but I think it was just part of the healing process for me.

I have also realized that I was very stressed out and upset about my Celiac diagnosis during this time, and stress goes right to my stomach. I have noticed when I am upset that my stomach symptoms are much worse. I will actually get a burning knot feeling in my upper stomach and my lower belly will bloat up too. I am mentioning this, because it sounds like you are very upset and I wanted to bring up that sometimes being really upset can cause a person stomach trouble too. Do you feel a little better when you are out having fun with friends or your boyfriend? If you feel a little better when you are having a good time and your mind is off of your problems, versus when you are at home and more focused on how bad you feel, that could be a sign that stress bothers your stomach too.

About the SCD diet, I have heard some really good things about the Specific Carb Diet. I think if you search this site you will find some positive post about it. I actually looked in to it too and may try it, or try sticking to the FODMAPs diet more strictly to try to get my bloating under control. I am feeling much better Celiac wise, but am still having bloating issues possibly from other foods or stress.

Good luck!

I'm so sorry to hear you are feeling so bad and have such a hard time.

I am still in the healing process too and the very worse time for me was from 3 1/2 - 5 1/2 months after going gluten free. I was very frustrated like you are, and then just before I reached the 6 months mark, I had a breakthrough and started to feel really good.

There is a lot of mis-information out there that people should start to feel good right away after going gluten free, but like others said, it takes 6 months to 18 months for most people.

One thing I did try before I started to feel better was the gluten free low FODMAPS diet. My GI doctor suggested it because I was having painful bloating like you mentioned having. I wasn't super strict about it, but I tried to follow it for a couple of weeks and it seemed to calm my system down quite a bit.

There is a ton of info online about it, but here is a link if you want to ask your GI doctor about it:

Open Original Shared Link

Hope you feel better soon.

I ate at Chipotle a few months ago. It was delicious and I had no reaction. After that, just out of curiosity, I did a web search on them and someone had commented that they had noticed that they were using the scoops that are in the different toppings to smear the toppings across the flour tortillas and that it could cause cross contamination issues. This was a older post, and I am wondering if anyone noticed if they still do this, or do they plop the toppings on the flour tortillas now? Their food is really good, so I am hoping they train their staff not to let the scoops touch the tortillas now since they seem very Celiac aware.

Taco Bell also has gluten free Cantina Bowls that my husband really likes. I agree with other that cross contamination risk could be high there so I avoid it myself.

I don't know the answer to your question, but I do have a Celiac friend who was eating regular pre-packaged Rice Kripie Treats thinking they were gluten free because "the label doesn't say they contain wheat".... She was able to eat them with no noticeable reaction and they contain malt flavoring. She does typically throw up and have D when glutened. I always thought it was strange that the Rice Krispie Treats didn't make her sick.

Mamaw- Pretty Please share the Twinkie recipe with us!!

I asked her what dairy was in it and she said honey. I was like you mean the stuff from bees? Yup that's what she meant she insisted that honey was a type of cheese... Needless to say I ordered a piece of plain broiled salmon that was cooked on foil and nothing else to prevent cc and stupidity.

 

I think she got confused because vegans don't eat honey maybe? But the cheese thing?!

This had me rolling! I don't know how you could keep it together when that waitress told you honey was a type of cheese. Hilarious!

It is fantastic that you have been feeling physically well nearly a year and that all of your test are normal! Congrats!

If it is has caused you so much anxiety to read that blog, it might be best to avoid reading things like that from now on. I have dealt with anxiety issues for a lot of years too. When I was in college I saw a counselor about it. I was getting really upset about world events and things I was reading in the paper, etc. She told me that I should stop reading the newspaper and watching the news, because there is nothing I can do about those things anyway and they are just upsetting me and making me anxious and fearful. It seemed like strange advice at the time, but it is true. I don't know much about world events as a result, but I do have less anxiety, fear and sadness. Also, As a worrier myself, my mom has always told me that 99% of the things I spend time worrying about will never actually happen. I have found this to be pretty much true. You are doing great with your Celiac recovery. Try to have some fun this weekend to keep your mind off of the things you have been worrying about :-)

Thank you first off for the kind words!!  It's definitely the colitis I think.  My doc put me on some high-power pills for ulcerative colitis to try and get some healing done, but as soon as I go off of them I go right back to where I was.  I guess you can't stay on the pills long term - it's more for when it flares up.  They told me my last resort is some other med that I have to sign a release on, because it can be highly dangerous.  That's not really something I want to be involved with!  I was really hoping I could find a natural way to get this under control - diet, essential oils, things like that...rather than have to try all of these different pills.  What did your mom do to put hers into remission?

Hello, Since it was so long ago that my mom had the major colitis problem, I'm not really sure what her treatment was. This was in the early 90's before we had the Internet to research everything ourselves, so I am guessing she probably took whatever pills were prescribed and at that time. I do know she was on anti-D pills for quite a while. I was thinking about it a little more, and she does have random bouts of unexplained D to this day, so maybe she does still have small flares, although very mild and short lived compared to what you are experiencing. I really hope you can find a way to get your colitis under control without having to take the dangerous pills you mentioned. I'm sure it's hard to decide what to do about that when you want to get better, but aren't sure about taking those pills.

Hope you feel better soon :-)

This is a great topic. I am still trying to figure this out myself too, so I'm interested to see the answers you get.

I haven't been out to eat in a few months now, and am feeling much better for it.

When I did eat out, I would ask for a gluten free menu and then ask if the food on the gluten free menu was safe for people with Celiac Disease. I was very surprised at how many times I was told by places that their food on the gluten free menu WAS NOT SAFE FOR CELIACS. It was very disappointing at the time, I think I actually teared up a little when I was told by someone that they don't recommend I eat there because of the high risk of cross contamination, but looking back I appreciate their honesty and concern for my health. Other places have eagerly told me that it was very safe for me to eat there, and after observing the way they handle food I decided it wasn't safe enough for me.

Hi luvrdeo,

Sorry to hear you are having major issues after this long. It sounds like you are doing everything right to treat your celiac. It must be very frustrating and exhausting to be sick all the time like that, and for so long. Hopefully your gastro doctor can figure out what's going on and get you the proper treatment.

I saw in your signature that you noted lymphocytic colitis. My mom had colitis that resolved after a while and thankfully hasn't come back in over 20 years, but it was a horrible thing for her to go through. Did your colitis ever resolve? I wasn't familiar with your type of colitis, and when I looked it up it said it's main symptom is persistent watery diarrhea, which you mentioned is a problem for you. Since you are so strict with your gluten free diet, I wonder if the colitis could be causing you so much trouble?

I hope you find your answer and will feel better soon.

Hello everyone!

 

I would still technically be undiagnosed, but this question did pop up in my head this week too.

 

 

At my work we have a full kitchen, and the chef has been really understanding of what I've been goin through.  A couple days ago he slapped on a steak with just salt and pepper for me to eat, and a couple hours later I had the gnawing kinda heartburn feeling down in my guts.   Within a couple days (and bathroom breaks)  that has since dissipated.

 

So even with no dressings of any kind, a plain piece of meat can cause that kind of reaction because of the grill its on?!?!?!

 

Wow,  this is way harder than expected, ugh!  Yea I've practically been stuck to cooking at home, which I am no chef, so it has been a slow learning curve in terms of flavorings for meat.....

It is way harder than it seems to be gluten free. Once you get past all of the obvious things, there are all of the cross-contamination issues to watch out for. It's great that the chef at work is willing to try to help you. If they use a flat surface type grill at work, it might help to put down some heavy duty aluminum foil before putting your meat on the grill. He could just turn up the edges of the foil a bit and also make sure it doesn't tear. I think I read that someone else here has their own designated pan at work that the chef uses. That gnawing heartburn feeling you described was one of my symptoms and drove me nuts! I hope you feel better soon.

Hi AuburnAmy,

It sounds like you have been through a lot with your health and doctors.

If you are confident with what your allergist is telling you and don't wish to pursue a Celiac diagnosis, you should try following the allergist advice of "stop eating this and you will feel 100% better". Since you have been so sick for so long, I wouldn't bother weening yourself off of the offending foods. Why continue the suffering these foods are causing you? I would cut the foods out cold turkey, that is what I did. I could never imagine touching gluten again after my doctor told me it was what was making me sick all of those years. Never.

Hi kareng,

I think I will probably just bite the bullet and buy new grates. I'm sure there is a way to get them clean, but will they ever be clean enough in my mind, if you know what I mean . I will just have to make sure my husband only grills meats and veggies on the new grates.

Hi Everyone,

 

I'm not sure if this question is in the right section of this forum - sorry if it's not .

 

It's finally grilling season where I live and I am wondering what is the best way to remove any trace amounts of gluten from a grill? My husband is mostly vegetarian, so he grilled a lot of Boca/Vegetarian gluten filled burgers on our grill last year before my diagnosis. I was lucky enough to get all new cookware/kitchen goods when I went gluten free, so I haven't had to worry about things like this until now.

 

We have one of the Infrared type grills, with narrow rows of grates that look like they could trap gluten. If I can really get the grill grates 100% clean of residual gluten, I can make sure it will be gluten free from now on. I was thinking I could also see about ordering brand new grates instead. What would you all suggest?

 

Thanks!

 

 

Feel Better!!!!

 

Maybe request one more tTG-IgA right before the May appt, since it was the only positive...perhaps it will be even lower by then???

Thanks!

That is a great idea. I will make sure to ask for that test before my appointment. I never would have thought of that, so thanks again.

I looked over my blood work more carefully after you asked before if my deficiencies were improving. I was very excited to see how much things have improved in 6 months. At the time of my diagnosis I had 13 test that came back very much out of normal range. After 6 months, I now only have 5 test that are just slightly out of normal range. I'm amazed at what a impact 6 months of gluten free living has had on my body!

Oh no! I hope you feel better soon!

Thanks!

I'm hoping it will be better by the weekend. I really need to get on a regular exercise routine to strengthen my back. I have been enjoying babying and pampering myself since my diagnosis 6 months ago, and haven't been exercising and have gained some weight. I guess it's time to start watching my calories and exercising now that my digestive system is so much better :-).

How did your appointment go?

Thanks for asking!

I actually had to cancel the appointment at the last minute because I somehow threw my lower back out and can barely walk (second time in three weeks!).

I can't get in to see him again until mid May, so I will have to wait until then to go over all of my results with him.

Thanks GottaSki!

I am very happy to see that the numbers are consistently dropping. Just that one little nagging high number is still out there.

I guess I am a little on the defense about the elevated TTG IGA, since the physicians assistant insisted that the level was high at 3 1/2 months because I had to be ingesting gluten. I remember asking you all about that at that time and everyone here said that is not always true, but I am sure it will come up tomorrow. I get to see the actual doctor tomorrow though, so maybe he won't give me a hard time about it, since hopefully he is more knowledgeable about the healing and recovery time frame.

My Vitamin D and Iron are slowly improving, but need a little more time too.

I will take your advice and won't worry about these things as long as everything is continuing to improve.