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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

First Set Back
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Hi everyone

 

Just a little one - and mostly my fault! I'm gluten-free, soy, dairy, and egg free.... I had been feeling so much better after 3 weeks. Got a positive diagnosis and came to terms with it. Finally had some new recipes to try! Frig full of food.... Much less nausea and feeling a little clearer. Was even getting some studying done again (woohoo)!!

 

Then I went to store.... hmm. Guess I am going to have to avoid that for a while longer!!! I was very careful about the gluten... but I bought some frozen dinners, some dips, some mixed salads. I tried some cheese. Felt ok, put some creamer (soy) in my coffee- just a little, and had something with soy... I know I know.... too much too fast. No sympathy needed - but wow. I guess I didn't really believe I could be eating one day just fine and the next day get sick. I thought the tests show it is gluten. How can all this other stuff be so bad too??!! I just can't wrap my head around the long list. I'm trying not to complain - I know so many people have longer lists!!

 

Anyway... I guess my reactions are a little delayed and probably cumulative. I guess that is something worth knowing. Worst stomach cramps - that's new! nausea and fatigue back, slept for hours.  And headache....raw throat from acid reflux.... back to bananas, carrots celery, hummus and chicken. Maybe rice. Not the worst thing in the world.

It's been about maybe a week, and I'm feeling better again except for fatigue....

 

I certainly don't deserve it I guess, but if you have any sympathy, or words of wisdom, thoughts about not eating the same 6 foods from now on, I'll listen <BG>.

 

I have also changed 2 meds. Checked on them - no gluten, but maybe they upset me anyway...doc changed the BP med for a 3rd time...sigh

 

Hope you are doing well and still getting answers!!

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It  seems  strange  with foods  as we all are  so very different... buy  I  can  tell you soy  is a big NO NO  for me  &man others..its  like the plague  for me....

Also  I  sometimes  can eat  a  certain food  by itself  but  add  another  food  with it  & I'm  done  for , plain ill... so for  me  eating  one  gluten-free food at  a time   works  for some  food  items...I guess  the  combo  kills  my system....just  certain things.....

 

So  yes, in the  beginning  you  have  to play around  with   food  to see  what  your  body  will tolerate.. I  have  also  found  things  I loved  before  being gluten-free  I now  never  care  for...&  then  I like  things  I  would have  never  ate  when eating  gluten....

we  are  a  unique  group  of  people.....

feel better  soon....

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Thanks. I'm sure it was the combination of things of a few days. I wasn't careless. But I did want to know if the list was real... It is a big change to make otherwise. I even threw out the soup I had in the freezer. I don't remember when i made it and what broth I used. Hate to waste the veggies, but it is what it is.

 

I can tell already my tastes are changing... no desire for bread - but that may just be fear (shh don't tell)!

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So sorry. Most of the time it is safer to stick with those few safe foods you know are okay. Only try adding one new thing at a time and even then, be cautious. My son eats the same things over and over and he is able to function much better. Even being extremely careful he gets random intestinal cramps and misery. You'll adjust. It takes time to come to terms with the new normal for you.

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Hi Willow.

 

It seems to be more common than not that soy will bother people, celiac or not.  Also, have you considered that dairy is bothering you?  Many celiacs have to cut dairy out for some time until their intestines heal up.  Most will be able to have some amount of dairy after that.  Lactose intolerance is very common, again, whether celiac or not but I think the % is higher in celiacs because the same damaged villi are used for digestion.

 

Just some "food" for thought  :)

 

Colleen

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Hi Willow,

 

When our guts are damaged, they aren't going to react like normal, healthy, undamaged guts do.  For one thing, they can be sensitive and inflamed and that can cause problems.  Also all that disruption in the gut leads to upsets in the gut flora balance.  So we may react to foods that otherwise wouldn't bother us because our guts are basically a mess.  It can help healing if you treat your gut well for awhile.  Give it simple whole foods to digest, simple meals, without a lot of spices, less carbs, less dairy, etc.   Try some probiotics and digestive enzymes too.  Frozen meals are for people with healthy strong guts, not newly diagnosed celiacs.  As mother superior would say, wag-wag finger in your face! :)

 

You really do need to eat differently now if you want to heal your gut.  After 6 months or a year you may be able to branch out and add more complex foods to your diet without problems.  But you'll probably get to that point faster if you start out with a simple diet and avoid most processed foods.  Make it easy on your gut so your gut can make it easy on you.

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I just  wanted  to throw  another  tidbit  out  there.....some  people  eat  only the  same  foods  forever  with no problems  but  for  others  they  develop  vitamin &  mineral deficiency  &  also  food  deprivation  because  their  food  choices  are  lacking  in healthy  quality...so  if  you  plan  on  a  very limited  diet  for  a  long  period  make  sure  it  is  a  healthy  choice  &  not  just  a  calorie  laden  junk  food..( which by the  way  is  usually a  kid's  choice).

 every ones diet  needs    to be  a  great  variety  of  foods  not  just  processed  ...some  people  never  eat  fresh , live  foods....

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Hi everyone

 

Just a little one - and mostly my fault! I'm gluten-free, soy, dairy, and egg free.... I had been feeling so much better after 3 weeks. Got a positive diagnosis and came to terms with it. Finally had some new recipes to try! Frig full of food.... Much less nausea and feeling a little clearer. Was even getting some studying done again (woohoo)!!

 

Then I went to store.... hmm. Guess I am going to have to avoid that for a while longer!!! I was very careful about the gluten... but I bought some frozen dinners, some dips, some mixed salads. I tried some cheese. Felt ok, put some creamer (soy) in my coffee- just a little, and had something with soy... I know I know.... too much too fast. No sympathy needed - but wow. I guess I didn't really believe I could be eating one day just fine and the next day get sick. I thought the tests show it is gluten. How can all this other stuff be so bad too??!! I just can't wrap my head around the long list. I'm trying not to complain - I know so many people have longer lists!!

 

Anyway... I guess my reactions are a little delayed and probably cumulative. I guess that is something worth knowing. Worst stomach cramps - that's new! nausea and fatigue back, slept for hours.  And headache....raw throat from acid reflux.... back to bananas, carrots celery, hummus and chicken. Maybe rice. Not the worst thing in the world.

It's been about maybe a week, and I'm feeling better again except for fatigue....

 

I certainly don't deserve it I guess, but if you have any sympathy, or words of wisdom, thoughts about not eating the same 6 foods from now on, I'll listen <BG>.

 

I have also changed 2 meds. Checked on them - no gluten, but maybe they upset me anyway...doc changed the BP med for a 3rd time...sigh

 

Hope you are doing well and still getting answers!!

I've had issues 3 times since being diagnosed in January. The first 2 times I had eaten out and I'm fairly sure I was glutened. The third time I just don't know. But I went back to eating 6 things...chicken, rice, bananas, berries, potatoes and sweet potatoes. Then after a couple of days I added carrots and asparagus. Then the next day added another 1 ingredient food. All the while keeping a food diary...tracking food and symptoms. Everything was good until I added my first non 1 ingredient food...A homemade bread. So...I'm thinking one of the ingredients in there is bothering me.

I guess my long winded point is that you should try to add in a food or 2 a day and keep it written down. See if something strikes you as an issue. It does seem like a lot of celiacs have other food sensitivities as well. I'm not sure why. Isn't the gluten thing enough? Lol.

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Thanks for all the advice. I found one source of soy I thought I had already rooted out! I checked the supplements I have - But doc told me to double the omega 3. So I opened the other bottle I had in back of cabinet. I didn't realize it was a different brand... Duh!! :(   It has soy. And it doesn't say gluten-free. Just when I thought I was so careful and had things figured out. I am my own source of poison. Last 3 of 4 days have been getting worse. I was ready to try and give up food! And it took me 4 days to find this. How could I be so stupid! I was taking 2 per day. I feel like back at day 1. I thought I was reading every label 3 times. guess I missed one :(

 

 

I did keep a food diary the first 2 weeks. Guess I'll go back to what I was eating. Banana for breakfast. Carrot, celery, or peapods and hummus for lunch, chicken and zucchini for dinner.  And popcorn or apple for snack....

 

Thanks for the good information from everyone - I appreciate your thoughts. This started out easy and got harder. Not sure why. Maybe because I got too confident.... or because I only started with just a few foods for the first couple weeks.

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I have no idea why a doctor would prescribe omega-3 supplements unless he was trying to give you some sort of placebo effect. 

A much better way to get the nutrients would be to eat fish, nuts, flax seeds, and leafy vegetables and to use vegetable oils. 

Recent studies of omega-3 have disputed the heart-health benefits that previous studies had purported. Omega-3 has zero effect on heart attack risk, or arterial plaque and does not lower blood pressure. 

But some of the side effects of too much omega-3 supplements include your body not being able to regulate blood sugar, high blood pressure, and depression. Not to mention that fish-based supplements are destroying fish populations on the East coast due to overfishing of small-fish species. 

I'd start questioning your doctor's advice and do some more research into anything that you've been taking.
 

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Thanks for all the advice. I found one source of soy I thought I had already rooted out! I checked the supplements I have - But doc told me to double the omega 3. So I opened the other bottle I had in back of cabinet. I didn't realize it was a different brand... Duh!! :(   It has soy. And it doesn't say gluten-free. Just when I thought I was so careful and had things figured out. I am my own source of poison. Last 3 of 4 days have been getting worse. I was ready to try and give up food! And it took me 4 days to find this. How could I be so stupid! I was taking 2 per day. I feel like back at day 1. I thought I was reading every label 3 times. guess I missed one :(

 

 

I did keep a food diary the first 2 weeks. Guess I'll go back to what I was eating. Banana for breakfast. Carrot, celery, or peapods and hummus for lunch, chicken and zucchini for dinner.  And popcorn or apple for snack....

 

Thanks for the good information from everyone - I appreciate your thoughts. This started out easy and got harder. Not sure why. Maybe because I got too confident.... or because I only started with just a few foods for the first couple weeks.

I'm sorry...it's hard to find out you're doing it to yourself.  You work so hard and it can be one thing... and it throws you off.  I also found it easier at first...struggling the past month...diagnosed in January.   

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I have no idea why a doctor would prescribe omega-3 supplements unless he was trying to give you some sort of placebo effect. 

A much better way to get the nutrients would be to eat fish, nuts, flax seeds, and leafy vegetables and to use vegetable oils. 

Recent studies of omega-3 have disputed the heart-health benefits that previous studies had purported. Omega-3 has zero effect on heart attack risk, or arterial plaque and does not lower blood pressure. 

But some of the side effects of too much omega-3 supplements include your body not being able to regulate blood sugar, high blood pressure, and depression. Not to mention that fish-based supplements are destroying fish populations on the East coast due to overfishing of small-fish species. 

I'd start questioning your doctor's advice and do some more research into anything that you've been taking.

 

My inflammation from the blood tests that were run were off the scale high and 50% higher than 2 years ago (I had surgery 2 years ago and they were expected to be high then). It's higher now with no explanation (except Celiac, but I'm sure I had it then too) It's an OTC, not prescription. I talked to my mom about it - she has Rheumatoid arthritis and her meds are stripping it from her body and she is taking 8 or 9 times the amount I am by prescription. But she is monitored.

 

I normally eat lots of green leafy veggies, and nuts like almonds, but dislike fish. I'll eat tuna once in a while. If you know of a source of Omega 3 supplement that's nonfish let me know, that would be great. But I am not getting enough in diet.

 

You don't take it for blood pressure or heart risk, but for inflammation and joints. and because mine was measured low, along with vit d, b and something else I forgot right now....

 

My doc doesn't recommend placebo medication. My iron and ferritin levels are also a little low. He said do not start taking anything yet. Let wait til you heal some and test it again in 6 months. Thanks for the concern though.

 

thanks

 

edited to show - He did say if it drops anymore, I'll need prescription. Some of the inflammation is coming from damage in esophagus shown in biopsy.

Edited by Wi11ow
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    • Hi All, I just got back from my first visit to Montreal in a couple years, and had to report back. STUFF IS HAPPENING THERE!

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