Today Is The Day...

[Wi11ow]

Hello everyone.

I've been lurking and reading through your website for weeks. There is such an amazing amount of information here. Thanks for sharing, even if it was unknowingly! I've been trying to figure out all day what to write to introduce myself. I have been searching for answers for 3 or 4 years for health issues (like everyone here it sounds like). Over the last 2 years I've been to maybe 7 or 8 doctors of various flavors including my doc, 2 ENT's, 2 different general docs (I've moved back into town recently) and most recently a GI.

 

I don't want to ramble - sometimes I think I have this all figured out, no problem. Then I just start crying and staring at my refrigerator hungry with nothing to eat. (It's full right now) I've been reading about gluten for weeks. I've read your newbie page, I understand the ways it can be hidden, I don't go out to eat...

 

I guess my first question is I couldn't get any doctor to do anything for me except tell me to take prilosec 2x per day, and then later prescribe another PPI. I am on Topiramax for migranes that started 3 years ago and I lost my job because of the medication, and now I am on high blood pressure medication. So, here's the question I was online and found Enterolab. I thought - hey - I can get this test done and find some answers for myself!! Cool!

 

I think I understand the Enterolab results. At least the food part. I just don't understand how scientific it is if doctors won't even believe the results? I will post the results if anyone thinks that would be helpful, but I was really really shocked at what came back. I expected maybe gluten. It shows I have antibodies IgA to gluten, dairy, eggs and my number for soy is twice as high as the rest. So what's left??

 

No seriously, I know, veggies, fruit, chicken rice. But soy is in everthing. dressing, mayo, gluten free soy sauce! the seasoning packets like taco seasons, half my spices have soy lecethin.

 

Sorry... Here's the question. My doctor poo pooed the test results. I knew he would. Both the general practioner and the GI. How serious or accurate is the antibody test?? I'm asking because I have read about it several times here and I thought maybe people had experience. He told me not to take everything out of my diet at once. I was pretty out of it and didn't ask why at the time. Maybe he thinks I am trying to figure it out? I think the test shows I don't need to figure anything out?

 

Next, I understand even a little gluten can and will do damage. Is it the same for soy? Can I use a little flavored creamer in my coffee? I was SO excited to find out Hidden Valley Ranch was gluten free. And I was using these potato flakes that had different flavors. Just add water and heat, as my safe food. They both have soy. And Pam cooking spray.

 

I have not gone free of anything yet. My GI ordered a upper endo scope because I have serious acid reflux. They call it silent b/c I seldom have heatburn. Just continuos major nasea ( I actually get sick fairly frequently), and a raw throat most days. He told me I didn't have Celiac and he wasn't going to test it, just for acid damage. I should say I'm also a bit over weight...

 

Imagine my shock when I woke up. I have something called Barette's Esophagus (damage), inflamed tummy but no ulcer, and he took 4 biopsies and tested me for Celiac.

 

I am currently waiting for test results. 2-3 weeks.

 

I friend of mine was in town I haven't seen in 3 years. I had my "last meal" this morning. Everything I can't anymore.

And promplty felt crappy, naseated, fell asleep and now major headache... sigh

 

BUT today is the day (at 11am)  I go GLUTEN, SOY(if I can figure it out), DAIRY and EGG FREE. Stuffed zucchini for dinner..

 

I know this is a gluten sight, but I see in the sig lines, there are a few people with the same many intolerances. I was hoping they would weigh in. Is rice, veggies(with nothing to dip in) and chicken really all I can eat now? I hope this didn't come across as too negative. Sorry it turned so long.

 

p.s. Is there a spell check before I post?

TIA

[mamaw]

Hello & Welcome

 

first  let me  say  the original Pam is gluten-free  ,, the  Pam Baking  spray is NOT.. It  contains  flour....

 

Some  people  have problems  with  soy  , others  not.... Corn  also  causes  some big  problems , others  Not...

 

Dairy is also  broken down  at the  tips of the villi.....

It  is wonderful that  the doc  did  biopsies.....even if  it  comes  back  negative, you could  have  non celiac gluten sensitivity  which is  again controlled  by a gluten-free  lifestyle....

Many of  us  have  other  allergies  to other  foods   that  don't  contain  wheat or gluten... you  will figure out  in time... once your body starts to heal  it will let you know what it likes & don't  like...

 

And after you have  healed the gut  you may be able to once  again  tolerate  egg, dairy.......

 

Make  sure  you take  digestive  enzymes  & probiotics..... to help heal the gut

 

also  some  who  can't  have  milk  go for almond  milk  & some  can tolerate  goat milk & camel milk...

 

 

There  are plenty of  allergy free  sites  where  you can find recipes  for  the things you need to avoid....plus  allergy free cookbooks...

 Remember  to  clean out  your kitchen for items  that could  cause  CC issues ie: toaster, drainer,  plastic & wooden  utensils, scratched  /porous  pots & pans.... CC  cause  big  problems......

 You can have  fish,  grass fed  beef, chicken, turkey,,,,,

 

hth

[mamaw]

I just found a  site  called  gluten free goodness... I think there is lots of recipes  you could make from that site....

Also cookbook "Cooking  for Isaiah  is a good  one... another:  allergy free cooking...

[1desperateladysaved]

 Many natural practitioners feel they have good success with them.   I had really good results when I lived away from foods I had anti bodies for.  However, my practitioner told me to find other foods.  Foods that I had not eaten, or were not tested to add to my diet.  A variety of foods is important (perhaps more so  than ever)
.  I tried some different meats such as elk, yak, bison, and various fishes.  One could try new or different vegetables.  I used beans (soaked for 24 hours and get rid of the soaking water.  Then cook in fresh water.  I tasted a sweet potato and it became one of my favorite foods.  I used more pumpkin and squash.  I really enjoyed fennel bulb which has a light licorice flavor.  I used rutabaga, and hashed browned Jerusalem artichoke.  Go to a grocery store and search the produce department.  Buy a different one frequently, but don't overwhelm your refrigerator.

 

Feel free to PM me about it if you wish.  I have been thinking of starting a group to discuss natural health care angles such as this, if you are interested feel free to PM me.

 

Dee

[Wi11ow]

Mamaw,

Thanks for responding. I was happy he did the biopsies. No one would do any blood tests. Will I need blood tests to confirm or is biopsy the final answer?

 

I can't use any cooking spray because they are all soy, but thanks. I am realizing how much I rely on soy. When I getting sick to my stomach, I usually have a protein shake. The one's I have are all soy based, or sometimes whey, I think that's milk. Or popcorn sprayed with Pam so the salt sticks cooked on stove. I think I have been living on that...

 

I've never heard of camel or goat milk! I have bought many new things this week I've been afraid to try. I even bought a tube of Polenta! Not sure what to do with it : ) I tried a bowl of the Almond Milk with Chex tonight. It's perfect. Thanks. First time today I didn't feel like (is there a polite way to say throwing up?) Thank you so much for taking time to look up a website for me. I appreciate it.

 

Would you mind telling me more about digestive enzymes  & probiotics? I've seen them mentioned, but I don't understand what they are or where to get them. TY

[Wi11ow]

1desperateladysaved -

 

hi. I guess I used to try a lot of new stuff. I like to cook.  (not bake). Don't think there has ever been flour in my house LOL. I loved to stir fry. 5 - 10 veggies at a time, but I always used the bottled sauces, or powder mixes you get in the gravy isle. They all have soy! I don't know how long I can eat plain veggies... I have discovered baba ghanoush and hummus this week. Not too bad. But I forgot to see what oil it was made of. Hopefully olive, not soy.

 

I made zucchini tonight. Cut in half length wise, scooped out, ground turkey, sauteed green onions and mushrooms mixed with the baba ghanoush and baked. Not bad. Next time, going to make it with advocado.

 

 

But I have been living on the same few things for a very long time. Maybe that has aggravated things for me. It just seemed like when I was sick to my stomach I always went back to the same foods. hmm.  Where do you get the more exotic meats? I had an ostrich burger once. I'm on a budget and never bought much meat except lunch meat. And I don't like beans... I am not in any way a vegetarian, but I think getting enough protein is going to be a challenge. Maybe when I heal some, I can go back to spicier foods and hot sauce again?

 

It's funny. I ate the same few things for the last year with variation now and again, and occasional pizza, fast food, sushi, or bag of cheetos, etc. But the idea of facing a forced change is overwhelming. I'm not even to the getting mad part yet. Maybe it's because the things I ate are off the ok list now.

 

I would love to talk to you more about natural health care. I see it playing a big part in my getting better. And feeling like I have any contol. I don't see a key to pm you. How do I do that? Is it in the profile page? Or you could PM me. I slept half of today and up half the night, so it'll proly be afternoon before I reappear.

 

Thanks for repyling.

[cyclinglady]

Welcome! Here are some newbie tips:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Let us know your biopsy results. You do not have to be thin and wasting away to have celiac disease.

Read this from the University of Chicago for more celiac disease info:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[GFinDC]

Hi Wi11ow,

 

You should get the blood antibodie tests also.  But you need to keep eating gluten until those tests are done.  There are a few other conditions that can cause villi flattening in the small intestine, so the blood antibodies are important.  The other conditions that cause villi flattening are more rare than celiac though.

 

It sounds like you are already eating a low gluten diet.  You don't have to eat a lot of gluten for the blood tests but they usually say about 2 slices of wheat bread a day.  I am not sure you are anywhere near that with your normal diet?

 

It's pretty easy to avoid soy if you stop eating processed foods.  They don't add soy to whole carrots for example, or lettuce etc.  Whole foods are healthy for you and can taste great with a little experimentation.  It may take a little while to get used to eating differently but it can be just fine once you are adapted.

[mamaw]

wi11ow

Digestive  enzymes   help to  break down  sugars, carbs & proteins, you take  them  before meals.....there are  many brands  I  use digest gold  by enzymedica....

 

Probiotics  are  taken on  a empty stomach.. there  are hundreds  available.. you will eed to research which ones  you could  take  with your restrictions...

 

Some even  take  prebiotics  so  you  can also look into  those.. I  know  little  about  them  ....I never  needed them  so  I  didn;t  do the  research....

 

If you eat  fish  go  for  any wild  caught fish  not the  farm  raised  junk  that are  raised  in  crap ponds...yes, crap ponds!

 

I order  wild caught  sockeye  salmon  from vital choice plus  other items from  them.. it comes overnight & I never  had  a problem in  eight years  ....

Look  for grass fed  beef  ( may have to  go to a  farm  or  someplace like  whole foods)... organic  chicken....that  way  you are not  fueling  your body with  a lot of  un necessary  junk contaminates.....

 

hth

[Wi11ow]

I've read several posts here, and googled and read what I could find. I'm not sure I follow. Most of it talks about DQ2 and DQ8.

 

And I read the post from Ninja, here,  about Interpreting your genetic results. I know Enterolabs only test one set. Ninja has a paragraph about the 302 and 202, but it is DQA1, and my results are DQB1.

 

I found this on Wikipedia "Celiac1 is a genetic name for DQB1, the HLA DQB1*0201, *0202, and *0302 encode genes that mediate the Open Original Shared Link Open Original Shared Link. Homozygotes of DQB1*0201 have a higher risk of developing the celiac disease, relative to any other genetic locus.^{Open Original Shared Link"}

 

My results say

Fecal Anti-gliadin IgA    29 Units   (Normal Range is less than 10 units)

Fecal Anti-casein (cow's milk) IgA    29 Units  (Normal Range is less than 10 units)

Fecal Anti-ovalbumin (chicken egg IgA   48 Units  (Normal Range is less than 10 units)

Feacl Anti-soy IgA    64 units    (Normal Range is less than 10 units)

 

HLA-DQB1 Molecular Analysis, Allele 1 0302

HLA-DQB1 Molecular Analysis, Allele 2 0202

Serologic equivalent HLA DQ 3,2 (Subtype 8,2)

 

I guess I just don't know how to interpret this. I think I have one of the genes? Man, I hate waiting for test results!!

Thanks for any info!

[kareng]

I merged these results here so all the info is in the same place.

[kareng]

I am sorry that your doctor refused to test you for celiac. You may want to seek another doctor and get the blood work and a proper endoscopy done. Enterolabs food sensitivity testing is not considered proven by the medical community.

[Wi11ow]

Hi Kareng. Thanks, I wasn't sure if to post it here, or a new thread. I have stayed with this doc because he is also my FAA medical doctor and has gone out his way to help me when I lost my medical license saving me lots of  money in the paperwork process. He is also the one who will be my doc if I can get off the migraine meds, etc and get better and be able to go back to work. I've come to realize he listens very well, and writes things down, but doesn't always do something.... But I have read so much here about docs not helping and understanding C. I was in Tacoma for the last 1 years and most of my troubles, so I am willing to give him a chance. I think he would listen if I brought him info. he has at least heard of C.

 

I did go to a GI for serious acid reflux and after meds for months, he ordered an upper endo scope. Told me he wasnt going to test for C because he didn't think I had it. When I woke up, he told me I had inflamed, damaged cells he thought were at least pre cancerous in my esophagus he biopsied, inflamed stomach he biopsied, and he did do biopsies for Celiac because of my symptoms. 2-3 weeks for results. But I have never had any blood work done.

 

Maybe 4 years ago I did blood tests for food allergies. negative. My reg doc said that's why I didn't need blood test now. i didn't know at the time C wasn't an allergy type disease. Right now I am just waiting for biopsy test result.

 

Does anyone think I should pursue any blood work if the biopsy is negative?

 

I really wanted to start gluten/soy free yesterday, but not if I need more tests.....

[Wi11ow]

From Mamaw "Make  sure  you take  digestive  enzymes  & probiotics..... to help heal the gut"

 

I just discovered Whole Foods! I am so excited. I went in for a few things and of course got sidetracked. I talked to someone there, not remembering what you recommended and he knew what I was talking about. I got a probiotic L-Glutamine. He said it would help heal the gut. Everyone there was so nice and willing to answer so many questions about their products. Also found the fake mayo I've been looking for!

 

I am 1 1/2 days gluten free and already feeling better. I feel more awake, and right now I am not even nauseated! A little afraid to eat dinner, but I will try more veggies.

[Wi11ow]

Day 4 1/2 gluten free. Still fairly exhausted, but I feel more alert today. The bestest improvement is I haven't been nauseated in 2 days!!

[GFinDC]

Day 4 1/2 gluten free. Still fairly exhausted, but I feel more alert today. The bestest improvement is I haven't been nauseated in 2 days!!

 That's great you are feeling better Wi11ow.  Just so you know, when we talk about whole foods, we don't usually mean the chain of health food stores by that name.  We mean (usually) foods that are not pre-processed and put in a box or can or some other container.  Foods in their natural whole state.  Not factory foods like cookies, soups, cakes, cereals, pizzas etc.  Actually, sometimes people do refer the whole food store chain, and call it "whole paycheck".  It's fine store chain to shop at though.  They do have a lot of gluten-free things and if you ask they may print you off a list of their gluten-free food options.

 

Keep it up, you are making progress!

[mamaw]

That's  so wonderful  you can see  results  of your  hard  work.... Now I  certainly don't  want  to put  a  damper  on your  progress  but  don't  panic  if  down the  road  you feel  not  so good... It is all  in the  healing  process... So  people  get  worse  before  they  feel better  & others  just the opposite  &  still others  just  get  better  with  no  set-backs....We  are  unique  to  say the least!..

 

KEEP up  the GREAT  work.......

[Wi11ow]

 That's great you are feeling better Wi11ow.  Just so you know, when we talk about whole foods, we don't usually mean the chain of health food stores by that name.  We mean (usually) foods that are not pre-processed and put in a box or can or some other container.  Foods in their natural whole state.  Not factory foods like cookies, soups, cakes, cereals, pizzas etc.  Actually, sometimes people do refer the whole food store chain, and call it "whole paycheck".  It's fine store chain to shop at though.  They do have a lot of gluten-free things and if you ask they may print you off a list of their gluten-free food options.

 

Keep it up, you are making progress!

 

LMAO - that's funny! And wow, they are expensive. I have been eating a few fresh veggies with hummus, chicken, popcorn, and brown rice. The reason I went in there is I was looking for a fake mayo that was gluten, dairy, and soy free. Anything to replace ranch dressing (soy) for dipping veggies, etc.

 

The other stores didn't carry a soy free version. BTW - I bought "Just Mayo", it's sunflower based. It's pretty good.

 

You're right, I can't afford to shop there - maybe just a few specialty items.

 

Thanks for the encouragement.

[Wi11ow]

That's  so wonderful  you can see  results  of your  hard  work.... Now I  certainly don't  want  to put  a  damper  on your  progress  but  don't  panic  if  down the  road  you feel  not  so good... It is all  in the  healing  process... So  people  get  worse  before  they  feel better  & others  just the opposite  &  still others  just  get  better  with  no  set-backs....We  are  unique  to  say the least!..

 

KEEP up  the GREAT  work.......

I will remember that and thanks. I have read lots of posts of people with setbacks. I'm still exhausted - just woke up from sleeping a couple hours, but the nausea had been gone for 2 days!!  Happy dance! I am willing to live on popcorn and water to keep that at bay!!!

 

I know (at least in my head) it will be months, not weeks or days til I feel better. It's funny how just a small improvment has improved my attitude so far.

[mamaw]

It is  always nice to get instant gratification....eleven years  ago I too  got  quick relief.. just keep  soaking  in  the information ( correct info) &  soon  it all will be old  hat  to you & you will be  paying  it forward....

 You  & other  newbies  take  this  disease  & put it  in  it's  place and  not  let  it  control  you!!!!!!!!!!!!!! it makes  me  as  an  oldie  to this feel good...

keep it up.....

[Fenrir]

Day 4 1/2 gluten free. Still fairly exhausted, but I feel more alert today. The bestest improvement is I haven't been nauseated in 2 days!!

Good to here you are feel a little better.

 

I started getting some relief of symptoms around a week in. I'm a little over two weeks gluten free and am noticing my joints hurt less, headaches are gone, going to the bathroom is improved, I have more energy and less brain fog. Still a lont way to go but I'm seeing small improvements every day.