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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newly Diagnosed With Lots Of Allergies Including Gluten
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17 posts in this topic

Hello Everyone!

 

So I am new too all of this and I'm not really sure where to start, so I'll give you a little background on me and how I got here and hopefully you kind people can give me suggestions!  :rolleyes:

 

I am 32 years old and for YEARS, I mean YEARS (probably 20) I have been dealing with the most frustrating tummy issues. I would throw up nearly every day for what I thought was no reason, my weight fluctuated by the 10's on a monthly basis, severe cramps, bloating, bubbles... etc etc.

 

I went to every doctor imaginable and spent thousands of dollars on tests, bloodwork, special foods, and procedures with everthing coming back 'normal' and 'within range.' It got to the point where my co-workers dubbed my illnesses as amyfowleritis. I felt for sure that I was dying some slow, painful death and some scientist would name my unknown issues after me and I would be in medical journals. Okay, so that is a bit of an exaggeration, but its how I honestly felt for a long, long time.

 

On my birthday last month I decided I wanted shrimp and grits, one of God's finer creations, and I broke out in pretty impressive hives that three benadryl could not tackle and I was sent to the allergist to get an epipen. Only there, at the glorious allergist, did I learn that I not only had a shellfish allergy, but I also have a gluten and dairy intolerance, peanut allergy, and I should also be avoiding other nuts, citrus, mint, strawberries, chocolate, pork, and all salt-water fish.

 

Needless to say, a giant light bulb went off over my head and I had a coming to Jesus moment once I realized that yes, this is why I feel like crap all the time. All of my favorite foods are torturing me and my GI system. I really wanted to go back and yell at all of the other doctors I have had the pleasure of knowing over the years for chaulking it up to severe IBS, but I decided to take the higher road and sulk in my own misery for the time being.

 

My allergist appointment happened earlier this week (Monday, actually) and I am still in a shock type state of mind and I really do not have a clue as to where to begin. I am asking you, fellow gluten (and maybe other allergies like mine) suffers; where did you begin? Did you stop everything cold turkey like a bad drug? Did you start to ween yourself off the foods you cannot eat? How did you change your life and all of the eating habits you have had so long? What was the best piece of advice you received?

 

As of right this second, I have a bag of gluten free pasta and veggies I can eat in my home. I cant really afford to replace everything in my pantry and fridge all at once, but I also dont want to starve myself. Anything, everything, whatever you have in your lovely brain of yours that you can share with me while I start this lifestyle change, I would truly and forever appreciate.

 

I apologize for my novel, but I hope you made it through the end... or at least skimmed over it enough to pick up my cry for help. Thanks!!!!! B)

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 AuburnAmy, on 18 Apr 2014 - 7:58 PM, said:

Hello Everyone!

 

So I am new too all of this and I'm not really sure where to start, so I'll give you a little background on me and how I got here and hopefully you kind people can give me suggestions!   :rolleyes:

 

I am 32 years old and for YEARS, I mean YEARS (probably 20) I have been dealing with the most frustrating tummy issues. I would throw up nearly every day for what I thought was no reason, my weight fluctuated by the 10's on a monthly basis, severe cramps, bloating, bubbles... etc etc.

 

I went to every doctor imaginable and spent thousands of dollars on tests, bloodwork, special foods, and procedures with everthing coming back 'normal' and 'within range.' It got to the point where my co-workers dubbed my illnesses as amyfowleritis. I felt for sure that I was dying some slow, painful death and some scientist would name my unknown issues after me and I would be in medical journals. Okay, so that is a bit of an exaggeration, but its how I honestly felt for a long, long time.

 

On my birthday last month I decided I wanted shrimp and grits, one of God's finer creations, and I broke out in pretty impressive hives that three benadryl could not tackle and I was sent to the allergist to get an epipen. Only there, at the glorious allergist, did I learn that I not only had a shellfish allergy, but I also have a gluten and dairy intolerance, peanut allergy, and I should also be avoiding other nuts, citrus, mint, strawberries, chocolate, pork, and all salt-water fish.

 

Needless to say, a giant light bulb went off over my head and I had a coming to Jesus moment once I realized that yes, this is why I feel like crap all the time. All of my favorite foods are torturing me and my GI system. I really wanted to go back and yell at all of the other doctors I have had the pleasure of knowing over the years for chaulking it up to severe IBS, but I decided to take the higher road and sulk in my own misery for the time being.

 

My allergist appointment happened earlier this week (Monday, actually) and I am still in a shock type state of mind and I really do not have a clue as to where to begin. I am asking you, fellow gluten (and maybe other allergies like mine) suffers; where did you begin? Did you stop everything cold turkey like a bad drug? Did you start to ween yourself off the foods you cannot eat? How did you change your life and all of the eating habits you have had so long? What was the best piece of advice you received?

 

As of right this second, I have a bag of gluten free pasta and veggies I can eat in my home. I cant really afford to replace everything in my pantry and fridge all at once, but I also dont want to starve myself. Anything, everything, whatever you have in your lovely brain of yours that you can share with me while I start this lifestyle change, I would truly and forever appreciate.

 

I apologize for my novel, but I hope you made it through the end... or at least skimmed over it enough to pick up my cry for help. Thanks!!!!!  B)

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Did you have actual Celiac blood work done? Please get all the necessary testing for Celiac Disease before you go gluten free. It is hard to go back on gluten later for a diagnosis.

Honestly, I think I've had everything in the book tested, but I gave up a couple of years ago in finding out what my cause was. I want to say that I was tested for Crohn's Disease and Ulcerative Colitis, but I do not recall Celiac specifically. I've had a colonoscopy, sigmoidoscopy, upper GI's, an endoscopy and ultrasounds of my insides within the last two years and I was always border-line this or border-line that, but never definitively diagnosed with anything.

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Honestly, I think I've had everything in the book tested, but I gave up a couple of years ago in finding out what my cause was. I want to say that I was tested for Crohn's Disease and Ulcerative Colitis, but I do not recall Celiac specifically. I've had a colonoscopy, sigmoidoscopy, upper GI's, an endoscopy and ultrasounds of my insides within the last two years and I was always border-line this or border-line that, but never definitively diagnosed with anything.

If it were me, before I gave up gluten, I would get a real Celiac blood panel and maybe an endoscopy with biopsies. I don't see how the allergist diagnosed you without that. There aren't any legit tests for gluten intolerance so that is a hard thing for an MD to diagnose.

There are others that know more about allergies - but food allergies testing is unreliable. The best test is to give up a food and see what happens.

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If it were me, before I gave up gluten, I would get a real Celiac blood panel and maybe an endoscopy with biopsies. I don't see how the allergist diagnosed you without that. There aren't any legit tests for gluten intolerance so that is a hard thing for an MD to diagnose.

There are others that know more about allergies - but food allergies testing is unreliable. The best test is to give up a food and see what happens.

All I really wanted from this posting was advice from people who have been going through something similar to myself who could offer their widsom on how to change my lifestyle and what to look after. :(  I wasnt looking for additional medical advice or to have anyone question what my doctor told me.To be honest and perfectly blunt, Kareng, I've been going through this for so long that I dont care how reliable you feel allergists are with their diagnosis. I've been screwed out of probably about $10K over the years from MD's and specialists (some of which were in the top of their field here in Atlanta) who want me to come back every two weeks for additional blood work or tests. None of them have been able to tell me specifically WHY I have been feeling the way I have. My last GI and I saw each other every two weeks for over a year. A  YEAR. and nothing. Yes, it may be a hard thing to diagnose and I am a shining example of the difficult diagnosis, but dont beat around the bush... just say you don't know. This allergist was the first person who has actually listened to me, took what I said into consideration, ran some $1,000 test and said 'hey, guess what... stop eating this and you'll feel 100% better.' I learned more from her in the three hours I was with her than I did in all of the years and countless visits I've had to these other doctors. I'm sorry if this seems rash, but I dont appricate the underminded tone. I may not have Celiac, but there is an obvious issue that at least someone had the brains to acknowledge and offered a legit possible fix for instead of wanting to medicate it, treat the symptom - not the problem, or poke and prod me over and over and over again. So, with that being said, if you have any helpful suggestions you may want to offer on how to change my diet without getting even more overwhelmed than I already am, I would greatly appricate it.

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All I really wanted from this posting was advice from people who have been going through something similar to myself who could offer their widsom on how to change my lifestyle and what to look after. :( I wasnt looking for additional medical advice or to have anyone question what my doctor told me.To be honest and perfectly blunt, Kareng, I've been going through this for so long that I dont care how reliable you feel allergists are with their diagnosis. I've been screwed out of probably about $10K over the years from MD's and specialists (some of which were in the top of their field here in Atlanta) who want me to come back every two weeks for additional blood work or tests. None of them have been able to tell me specifically WHY I have been feeling the way I have. My last GI and I saw each other every two weeks for over a year. A YEAR. and nothing. Yes, it may be a hard thing to diagnose and I am a shining example of the difficult diagnosis, but dont beat around the bush... just say you don't know. This allergist was the first person who has actually listened to me, took what I said into consideration, ran some $1,000 test and said 'hey, guess what... stop eating this and you'll feel 100% better.' I learned more from her in the three hours I was with her than I did in all of the years and countless visits I've had to these other doctors. I'm sorry if this seems rash, but I dont appricate the underminded tone. I may not have Celiac, but there is an obvious issue that at least someone had the brains to acknowledge and offered a legit possible fix for instead of wanting to medicate it, treat the symptom - not the problem, or poke and prod me over and over and over again. So, with that being said, if you have any helpful suggestions you may want to offer on how to change my diet without getting even more overwhelmed than I already am, I would greatly appricate it.

Wow! Ok.... Well... This is a Celiac Forum, so we may lean a bit that direction. As I said - I would want to know if I have an autoimmune disease and a blood test is pretty simple. An autoimmune disease is a bit more serious than an intolerance. I just want you to have the info to make a good decision.

But...assuming Celiac or NCGI, this is a good place to start:

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

Edited to add: I would get my records from all those loser doctors. Maybe they already did a Celiac blood panel. Some docs have no clue what they are looking at.

Edited by kareng
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Wow! Ok.... Well... This is a Celiac Forum, so we may lean a bit that direction. As I said - I would want to know if I have an autoimmune disease and a blood test is pretty simple. An autoimmune disease is a bit more serious than an intolerance. I just want you to have the info to make a good decision.

But...assuming Celiac or NCGI, this is a good place to start:http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

Edited to add: I would get my records from all those loser doctors. Maybe they already did a Celiac blood panel. Some docs have no clue what they are looking at.

Thank you! When I found this site I knew it was a celiac website but I also saw several postings about gluten allergies and the tab for gluten forums. I thought I was posting this under that part of the site and I guess now that is not the case so I apologize for getting worked up. You are right, I do want to know if there is something else going on as well, but I would have assumed that I had been tested in the past because I honestly cannot remember everything I was tested for. One quack had me scared to death for a week or so because he mentioned l leukemia. After that, I lost faith in the MD world and decided to just eat raw for awhile. So I've been through a lot, I've had many people tell me what to do and what I should be doing assuming I didn't have a clue, so I do get defensive when someone I don't know does the same. I know you have good intentions and I'll try to react to ways in more of a lady like manner, if my red head temper doesn't get the best of me again. :) thanks for the link! I've been doing a lot of reading lately and I'll add it to the lists! Have a good night.

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Thank you! When I found this site I knew it was a celiac website but I also saw several postings about gluten allergies and the tab for gluten forums. I thought I was posting this under that part of the site and I guess now that is not the case so I apologize for getting worked up. You are right, I do want to know if there is something else going on as well, but I would have assumed that I had been tested in the past because I honestly cannot remember everything I was tested for. One quack had me scared to death for a week or so because he mentioned l leukemia. After that, I lost faith in the MD world and decided to just eat raw for awhile. So I've been through a lot, I've had many people tell me what to do and what I should be doing assuming I didn't have a clue, so I do get defensive when someone I don't know does the same. I know you have good intentions and I'll try to react to ways in more of a lady like manner, if my red head temper doesn't get the best of me again. :) thanks for the link! I've been doing a lot of reading lately and I'll add it to the lists! Have a good night.

Originally, you posted this under products. I moved it here because I thought you had a diagnosis. I just wanted to help you as I have some knowledge about Celiac disease and know there is no such thing as a " gluten allergy". There are wheat allergies. Sometimes we say allergy to get other people, like a waiter, to understand. There are a lot of clueless doctors and pseudo- doctors that are not helpful. Maybe you should check out the university of Chicago Celiac center website, too. It has a lot of good info.

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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.

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Allergy/intolerance/sensitivity... They're all pretty much the same word for me. She described it as a "heightened sensitivity." I don't see the need to be too technical for my purposes and Allergy is a word that everyone understands so I'll probably continue to describe it and label it as such. I'll check out that website, thanks for that suggestion. I wanted to have the post under products or something along those lines so people who were discussing what they ate, what brands they recommend amongst each other, etc might see mine and offer suggestions. I never stated I had a diagnosis in my first post and just listed the foods my allergist told me to avoid for fear of gastro issues, hives, or worse (foods I tested positive for and had reactions to) and said gluten, dairy and peanut allergies. I'll probably delete this post tomorrow when I am more awake and start over. Thanks for your help.

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I take that back. In my headline I said newly diagnosed. Smh. I bow in apologies :( I totally missed that. Coming up with a clever tag line is not something I am all that great with, but I am type a crap ton. Lol.

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I take that back. In my headline I said newly diagnosed. Smh. I bow in apologies :( I totally missed that. Coming up with a clever tag line is not something I am all that great with, but I am type a crap ton. Lol.

 

I'm someone that cut out gluten prior to suspecting it as a problem and I really wish I'd had the benefit of the advice Karen gave above. Once you've cut it out it becomes much harder to get a diagnosis. It may not be what you wanted to hear, but it's very good advice. 

 

I know what its like to be surrounded by food that you can no longer eat. However before you throw everything away, why not start keeping a food diary and record what you eat and how you feel. Stick to non processed foods, fresh vegetables, meat and no grains. See if you feel better? I followed a paleo diet, which looking at the exclusions you've posted above would probably be something you could eat. There are lots of great sites and recipe ideas associated with it so that may be something to consider. 

 

The good side is that I feel so much better that it more than makes up for missing out on some old favourites, hope that proves the case for you also. Good luck :)

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Allergy/intolerance/sensitivity... They're all pretty much the same word for me. She described it as a "heightened sensitivity." I don't see the need to be too technical for my purposes and Allergy is a word that everyone understands so I'll probably continue to describe it and label it as such. I'll check out that website, thanks for that suggestion. I wanted to have the post under products or something along those lines so people who were discussing what they ate, what brands they recommend amongst each other, etc might see mine and offer suggestions. I never stated I had a diagnosis in my first post and just listed the foods my allergist told me to avoid for fear of gastro issues, hives, or worse (foods I tested positive for and had reactions to) and said gluten, dairy and peanut allergies. I'll probably delete this post tomorrow when I am more awake and start over. Thanks for your help.

You weren't really asking about specific products. The questions were the typical - I just got diagnosed, where do I go from here. I am sorry if I can't help you. Perhaps reading the dinner chat might help you with the what Celiacs eat?

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I take that back. In my headline I said newly diagnosed. Smh. I bow in apologies :( I totally missed that. Coming up with a clever tag line is not something I am all that great with, but I am type a crap ton. Lol.

 

Welcome Amy!!!

 

If you haven't taken a look...check out the Newbie 101 thread Kareng recommended -- it really is a very great place to start.

 

Don't worry about the title of your thread, it can be changed by the Moderators if this thread stays live -- or you could simply start a new thread with a different title, which may get the attention of more members.  Perhaps "Newly Gluten Free"?

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I am one of those with celiac who just had anemia as a symptom (reflecting back I had some anxiety that I attributed to perimenopause), but there are others who had severe intestinal damage and NO Gastrointestinal symptoms. They went in for testing because a relative was diagnosed.

Since you have been suffering for all this time without a firm diagnosis, I would ask for every copy of every lab taken in the last five years or so. Was a celiac blood panel done? What were the results? If you have not had the test, I would strongly recommend asking for one before giving up gluten for life.

I have allergies (since I was a kid) and you can not eat foods that give you rashes, hives or swelling. You must quit cold turkey. I can not tell you how scary it is to have your face, tongue and throat swell up on you! Every new exposure could kill you! Even if you tested positive to wheat for a wheat allergy, please get a celiac test! Because you can have both.

Worried about having to donate food in order to keep you safe? Look at the big picture!

Finally, do more research. You are your best advocate for good health!

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Hello & welcome......When  new  people  come to this  site  I  can tell  you we all try to give  the  most accurate  information  we  can... my pet  peeve  is  people  spurting out  wrong  info..... I  feel Kareng  was  just  giving  facts to  you  just in case  you didn't know... we  always  should  mention  testing because  it has  happened  where  people  went  gluten-free  &  felt better  but  later on found  out  it  was  a much  bigger  problem .....

Believe  me  when I say  many of us  don't like the medical profession.. So  if  you are  content  with  your  decision  then by all means  go  with that... as  an adult  you have  the final  say  not  a doctor....

It is  an  expense  re-vamping  a kitchen to a  gluten-free  one..... I  would  replace  the  toaster  as  you can find  one for ten  bucks..... if  you  can't  afford  to  do  all at once the toaster  is  important  to  replace.... replacing  plastic  utensils  also  are not  very  pricey... but  keep in mind  if you have  scratched pots & pans  &  continue  to use  them  you still will be  getting  some gluten in your diet....

 Food  choices:  all beef, chicken, fish fruits & veggies  all are gluten-free  in their  natural  state.... ( think naked  food) just  don't  buy marinated,  coated, rubs or  seasoning  on  these  items... so  that  should be  an  easy  task...

Most companies  now  have  their  foods  labeled  that  are  gluten-free  so  become a label  reader....  watch out for hidden  gluten ie:  malt products,  soy  sauce, beer to name  a few....

Think  about  allotting  so  much a month  to  replenishing  your  food  with gluten-free  , same  with  cooking  items.... soon  you will have  a  small  stockpile  that  you now  will be able  to cook/eat  safely.. Start out  with  items  you truly  enjoy first  ..

Also if  you work  make yourself  a  gluten-free  goodie  box  for work, your  car & purse. SO  when  you  can't  find  a place to eat  you  will have a snack to carry  you  until  you can get  home....

Check out  restaurants in your  area  to see  where you  can dine out.....

Wendy's,  Chick F-La, red robin, PF Chang's, Chipolte Grill, Uno's  Chicago grill,   boston Market to  name a few  who have  a gluten-free menu...  hth

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shellfish allergy, but I also have a gluten and dairy intolerance, peanut allergy, and I should also be avoiding other nuts, citrus, mint, strawberries, chocolate, pork, and all salt-water fish.

 

Hi, I was diagnosed with a wheat allergy, peanut allergy, hazelnut allergy, grape allergy, egg allergy, shellfish allergy, a dairy intolerance and a gluten intolerance and oral allergy syndrome.  I never had the appropriate tests done before I went gluten free for celiac disease, so I will never know.  And now I wouldn't be able to eat it again to get the tests done!  It is hard at the beginning, but it gets so easy to eat with all these allergies.  I have now reintroduced dairy, I can now eat cheese and yogurt (but still can't tolerate milk and icecream)...  I can eat eggs in things, but not on their own.  

 

If I were you, I would and did go cold turkey on everything your allergist was concerned with.  There is a lot of food out there, it is just about learning new ways to eat.  You can no longer eat the convenient (poison) foods.  You have to make everything from scratch.  I eat a lot of beans, meat, and fruits and veges...Luckily I can eat almonds as well.  It's amazing what you will learn about preparing food.  I wish you luck, hopefully your new journey will teach you as much as it has taught me!!  

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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      I have not. I'll talk to my doctor about it
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