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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.

New To Gfd, Have Many Questions On Diet.
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10 posts in this topic

Hello, I am a new member and this is my first post. About 2 months ago I started feeling really bad, muscle spasm, low energy, constipation, constant never ending hunger and frequent nausea along with many other things.

Now I have been trying to be Gluten-Free for about 2 to 3 weeks except occasional times, beer made from barley malt and a wheat wrap and even barley malt digestive enzymes.

I have been reading as much as I can and came to realize that even if I go 100% gluten free I might still suffer a lot because people with gluten-intolerance/celiac are usually affected by other food that are Gluten-Free.

My main concern for now is to make sure I eat the proper food but it feels as if just about any food makes me feel like crap.

If I don't eat after about 4 hours I'll get extremely hungry and get nausea, the nausea goes away when I eat, gluten or not.

This is what I eat.

Morning meal "Spaghetti sauce from tomatoes/beef/spices/peppers/garlic"
Then I'll have a ground coffee with white honey and coconut milk added with coconut oil.
Followed by either Yogurt usually fat free with frozen berries, cinnamon, sometime with whey protein and gluten free cereal from corn/amaranth/buckwheat/flax/quinoa with almonds and chia seed.

Later on I'll have Gluten Free bread made of Rice flour/tapioca ad corn starch with usually white honey
Then at night either rice noodles or brown rice or plain all natural peanut butter.

It seems as if whatever I eat will give me cramps or I'll feel bloated. I am wondering if this is either something in the food or just because my intestines are still fragile or cross contamination? I also wonder how bad I gotta be about this, seems as if I could go all Gluten-Free and still get no healing whatso ever period untill I figure out something was cross contamined which seems to possible affect any ingredients, gluten freen nuts? gluten free spies? gluteen free water? Seems overkill.

It seems weird because 3 months ago I was literally fine and now it got bad very quick, I used to eat gluten in anything before though, noodles,bread and cereal a lot for my whole life.

Should i try cutting out some foods as I know many people cant tolerate nuts rice or corn or just wait and give it some more time to see how I heal? I also smoke marijuana every day and I tried to find informations about it and people say it helped them cope with the negatives effects of gluten but I feel it might make my cramps worse due to the hunger.

 

Thank you for the help, I don't plan on having cheat days or anything but more worried about how crazy I have to go about it.

I'll do everything needed to get my health back.

 

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Hello, I am a new member and this is my first post. About 2 months ago I started feeling really bad, muscle spasm, low energy, constipation, constant never ending hunger and frequent nausea along with many other things.

Now I have been trying to be Gluten-Free for about 2 to 3 weeks except occasional times, beer made from barley malt and a wheat wrap and even barley malt digestive enzymes.

I have been reading as much as I can and came to realize that even if I go 100% gluten free I might still suffer a lot because people with gluten-intolerance/celiac are usually affected by other food that are Gluten-Free.

My main concern for now is to make sure I eat the proper food but it feels as if just about any food makes me feel like crap.

If I don't eat after about 4 hours I'll get extremely hungry and get nausea, the nausea goes away when I eat, gluten or not.

This is what I eat.

Morning meal "Spaghetti sauce from tomatoes/beef/spices/peppers/garlic"

Then I'll have a ground coffee with white honey and coconut milk added with coconut oil.

Followed by either Yogurt usually fat free with frozen berries, cinnamon, sometime with whey protein and gluten free cereal from corn/amaranth/buckwheat/flax/quinoa with almonds and chia seed.

Later on I'll have Gluten Free bread made of Rice flour/tapioca ad corn starch with usually white honey

Then at night either rice noodles or brown rice or plain all natural peanut butter.

It seems as if whatever I eat will give me cramps or I'll feel bloated. I am wondering if this is either something in the food or just because my intestines are still fragile or cross contamination? I also wonder how bad I gotta be about this, seems as if I could go all Gluten-Free and still get no healing whatso ever period untill I figure out something was cross contamined which seems to possible affect any ingredients, gluten freen nuts? gluten free spies? gluteen free water? Seems overkill.

It seems weird because 3 months ago I was literally fine and now it got bad very quick, I used to eat gluten in anything before though, noodles,bread and cereal a lot for my whole life.

Should i try cutting out some foods as I know many people cant tolerate nuts rice or corn or just wait and give it some more time to see how I heal? I also smoke marijuana every day and I tried to find informations about it and people say it helped them cope with the negatives effects of gluten but I feel it might make my cramps worse due to the hunger.

 

Thank you for the help, I don't plan on having cheat days or anything but more worried about how crazy I have to go about it.

I'll do everything needed to get my health back.

 

Hi Renegade,

 

Welcome, and please Get Well.  Here are some get well flowers for you ***.

 

I can understand the I'll do anything to get my health back attitude.  I have had that attitude for 15 years at least.  Notice my name, One Desperate Lady.  I would keep all the whole foods that you can for now.  My breakfast usually contains Poached eggs, nut muffin, and/or fruit and coconut or olive oil.  I think coconut milk is very healing and healthy, also coconut water is my favorite treat.  You may want to try some new meats or vegetables.  One is not likely to have antibodies to things they never have eaten.  One of my favorite new veggies is fennel bulb.  One can find it in the produce section and it has a light licorice flavor.

 

How long have you had noticeable symptoms?  I am 30 years past my first obvious sight of mine!  That does tend to make one rather desperate.  I have done many hundreds of things to get better, but gluten seemed to be the main root of my issues.  I have been celebrating this week because I had a test for nutrient absorption and received my first objective proof of healing.  I hope the same for you quite soon.

 

D.

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" everything  needed to get my health back"  First  off  that means  a  gluten free  lifestyle  at  100%  24/7 ,  365  days  a  year..... No   regular  beers  just  gluten-free  ones. And  a  side  note  I  would  not  be  drinking  beer &  a lot of  processed  gluten-free  food  while you are trying to  get  healthy.

Tomatoes   are  members  of the nightshade  family   so  yes, many have  problems  with  nightshades..... and  for  early  morning. on  an  empty  stomach. I'm not  sure  that is a good  choice....

Many go  dairy  free  in the beginning   along  with  gluten-free.  Many  docs  tell people  to also be  dairy  free....

We  all  are  unique  in  our own  special  way  so  what  happens  to  you may not  fit  the next  person ,  vice/versa.. Some  of us   can  have  corn   for  example  but  others  find  they  can not.  This is  a  learning  process over  time,  trial & error...

I  suggest  you  start out  with  a  very basic  , plain gluten-free  diet,  fruits, veggies,  fish,   organic  meat/ chicken...grass  fed  beef  is the  best...

There is not  set  rule  on  how long it  will take  for your  intestinal tract  to  heal some  it  takes little  time , others  it  can  take  up to  five  years...

You may  want to  take  probiotics  & digestive  enzymes  to help  in the healing process...

I  have  heard of  smoking  pot  for  cancer  &  such but  I honestly  have  never heard  anything  about it  for celiac..

Another  suggestions  is  even though  the grains  you are  eating  are gluten-free  it  may be  just  way to  many  grains  for  your  body to handle...

Your  diet  doesn't  seem  to me  to be  enough so I  can understand  why  you feel  hungry...  I'm   not  so  sure  you  are  having  enough protein on a  daily basis....

I know  we  are  not  supposed  to  eat  a lot  of meat  but  that  is the  only  protein  source  that  I  can  eat  that  helps  when I  get  the  low  blood  sugar,  shaky  feeling...no other  proteins  make  it  go  away.  That is  why I only  eat  grass fed to finish beef, organic  chicken,  wild  caught  fish..........

good  luck  on  your  journey...

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Hello, I am a new member and this is my first post. About 2 months ago I started feeling really bad, muscle spasm, low energy, constipation, constant never ending hunger and frequent nausea along with many other things.

Now I have been trying to be Gluten-Free for about 2 to 3 weeks except occasional times, beer made from barley malt and a wheat wrap and even barley malt digestive enzymes.

I have been reading as much as I can and came to realize that even if I go 100% gluten free I might still suffer a lot because people with gluten-intolerance/celiac are usually affected by other food that are Gluten-Free.

My main concern for now is to make sure I eat the proper food but it feels as if just about any food makes me feel like crap.

If I don't eat after about 4 hours I'll get extremely hungry and get nausea, the nausea goes away when I eat, gluten or not.

This is what I eat.

Morning meal "Spaghetti sauce from tomatoes/beef/spices/peppers/garlic"

Then I'll have a ground coffee with white honey and coconut milk added with coconut oil.

Followed by either Yogurt usually fat free with frozen berries, cinnamon, sometime with whey protein and gluten free cereal from corn/amaranth/buckwheat/flax/quinoa with almonds and chia seed.

Later on I'll have Gluten Free bread made of Rice flour/tapioca ad corn starch with usually white honey

Then at night either rice noodles or brown rice or plain all natural peanut butter.

It seems as if whatever I eat will give me cramps or I'll feel bloated. I am wondering if this is either something in the food or just because my intestines are still fragile or cross contamination? I also wonder how bad I gotta be about this, seems as if I could go all Gluten-Free and still get no healing whatso ever period untill I figure out something was cross contamined which seems to possible affect any ingredients, gluten freen nuts? gluten free spies? gluteen free water? Seems overkill.

It seems weird because 3 months ago I was literally fine and now it got bad very quick, I used to eat gluten in anything before though, noodles,bread and cereal a lot for my whole life.

Should i try cutting out some foods as I know many people cant tolerate nuts rice or corn or just wait and give it some more time to see how I heal? I also smoke marijuana every day and I tried to find informations about it and people say it helped them cope with the negatives effects of gluten but I feel it might make my cramps worse due to the hunger.

 

Thank you for the help, I don't plan on having cheat days or anything but more worried about how crazy I have to go about it.

I'll do everything needed to get my health back.

 

Hello and Welcome!

 

But you have not been gluten free by having wheat wraps and barley enzymes, etc.

 

You might start by having three balances meals a day. And not worry about other food intolerances, at this time.  And you might want to cut out the weed.  It might increase your resolve toward good health.

 

If you need help with specifics....that's why we are here! :rolleyes:

 

Great suggestions preceded me in posting.

Edited by Lisa
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I am 23 years old, had chronic constipation about 2 years ago and always felt lack of energy, I been doing exercise 2 to 5 times a week for the past 2 years my body looks healthy but it really is not, I have also been having hey fever for as long as I can remember. I definitevely want to buy more meat but then it is pricy specially organic one, not everyone can afford to buy such pricy food. Also I didnt buy beer thinking i could get with it, I saw it contained barley malt after drinking it. I get more aware of all the gluten contamined stuff every day. Spaghetti sauce is actually the one meal where I feel is the easiest to digest, makes me feel full, I take apple cider vinegar from time to time to help maintain a healthy alcaine level and it makes spaghetti sauce easiest to diggest, how exactly are tomato possible bad? and how would I know if I can't tolerate them?

Edited by Renegade
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Hello and welcome. I wouldn't, at this point worry about my food being organic (or grassfed) or anything more special than being gluten free. Gluten free eating can be overwhelming just by itself and I know organic is costly and can be almost as frustrating if you live in an area that doesn't have a decent selection.

 

I would start with getting gluten completely out of your diet. If the spaghetti sauce seems to be working...for now I would continue with it. I don't think you're getting enough to eat either, solely going off what you previously wrote. Have you been tested for Celiac? If you haven't and you are able to...I would talk to your doctor about doing that before you go gluten free as you have to be consuming gluten for the tests to come out ok. If you can't see a doctor, for whatever reason, and feel like going gluten free is a good start toward getting your health back in line...then definitely continue with your gluten free journey.

I am having struggles of my own with figuring out meals for my family of 5 (my youngest son has tested positive for Celiac and we're going gluten free as a family to avoid any cross contamination issues) and it can all definitely be overwhelming.

Do you generally cook? Enjoy creating concoctions from scratch and all that? If so, I would hit up your local library and search out some gluten free cook books. I currently have a nice stack of them sitting in my living room. :) There is also a raw food diet cook book that I threw in the mix just because it seemed like a good idea at the time (though now that I've read through it a bit...I think I'd need a much, MUCH larger garden than the tiny one I have!)

Do you live by yourself or with roommates/family members that are not gluten free? Cross contamination is a big issue there. You're going to need your own gluten-free stuff in a gluten-free area. Any wooden spoons that you've used previously for stirring up some mac & cheese or regular noodles are going to have to be replaced as wooden stuff tends to harbor things like gluten. Same with your toaster and any scratched up cutting boards. I plan to do this slowly as I don't have money to go replacing all my stuff. The wooden spoons though, I know I can find at the Dollar store, so they will go first. If you're on your own, that will make things a bit easier in that regard.

One idea is to buy a bag of chicken breast and cut each breast in half. The 3lb bags in the freezer section of my store are currently 8.99. Now, that doesn't go too far for my family of 5 but if you cut them in half and froze them you could get double the meals and I think you would get at least 10 meals from that. A half a breast of chicken cut up in pieces and mixed into a salad will make a decent meal. We usually have that for either a lunch and occasionally will for a dinner, especially when it is hot out. We like to add things like peas and cut up carrots to our salads and cucumbers and sunflower seeds and such so it does round it out quite well. A thing or two of leaf lettuce and some baby spinach makes a pretty decent salad. A bowl of yogurt and some fruit and it's a fairly decent meal for us.
Or you can cook up another half a breast and some rice and some veggies and have a pretty decent meal there too. Of course, that is if you like chicken. :)

Same thing with other cuts of meat. You don't need a huge piece to make your meal...just some veggies and fruit to help round it all out and maybe some rice. I, unfortunately live in a house full of incredibly picky eaters and while the salads work for my self and my husband and my older son...the youngest son and my daughter don't like lettuce (I'm working on the little guy!) So my youngest son's idea of a salad is mixing peas and carrots together, nothing else. Oh yeah, he's not a big meat eater either. *sigh*

 

As far as the tomatoes and issues with them and other nightshades....that, I think, is something you will figure out once you've gotten the gluten out of your system. From what I've read that's when other intolerances seem to pop up for people. But, it doesn't mean that it will for you.

I think some small snacks in between your meals would help you as well. Peanut butter and apples, popcorn (not the nasty stuff you buy in a box for your microwave) but you can buy popcorn and throw it in a brown paper lunch bag and pop it in your microwave...it's cheaper in the long run and tastes better and you have complete control over what goes in it, carrots, sugar snap peas, water melon (which is wonderful frozen!)

I would try to steer clear of alcohol of any kind until you've been gluten free for a while and your body has had a chance to heal. Oh...eggs are a good protein source too, are you ok with eating those? My little guy gets a good portion of his protein from eggs and peanut butter. He will occasionally eat meat, but it is rare. Good luck figuring it all out...it's overwhelming at first, especially since gluten seems to be hiding in everything! Just remember to read labels.....sometimes the "gluten free" stuff isn't truly gluten free if it's processed in a place that processes wheat products as well.

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yes,  you  are  right  eating  healthy  is  very  expensive.   The  old  saying  is "we    are  what  we  eat"....so if  we  are  junk  eaters are  bodies  will not   be  as  healthy  as  another  who  watches  the foods  they  eat. In today's  world  there  is so  much  bacteria , chemicals &  sprays  that  we  unknowingly  are poisoning  are  bodies....for  instance  there  can be  up  to  50  different  kinds  of  chemical  sprayed  onto lettuce, many  never  even  try to  wash  it  before  eating...same  with  fruits  & other  veggies... baby  carrots  are  another  example.... most  just  pop  then into their  mouths  never  washing...

Salad  bars at  restaurants  can  use  a  chemical  solution  to  spray  over  the  salad  bar  to keep  the  fruits/veggies  fresher for longer  periods  of time....

Please  look  on Google  &  search  about  what  garbage  is  being  used  on our  foods in the US. European  countries  have  long  banned the  use  of  GMO"S in  foods  but  the  US  still  allows  it  here...For  some  of  us  our livers  cannot  work  hard  enough  to  remove  all  this  stuff  so  then  illness'  takes  over..

One  way to  save  a little  is  to  buy in  bulk, the  basics  to  get  a  good  start on  the  gluten-free lifestyle....Most  do not  have  a  one-stop gluten-free  store  near  them  so  mail order   is  usually  the  way... Buy  one  extra  gluten-free  item  each  week  & soon  you will find  you have  a nice  supply of gluten-free. Plus  you will not  feel  deprived....

The  apple  cider  vinegar    is  good  mixed with  water....but  again  a  good  probiotic &  digestive  enzymes  are  needed...

If  you  have  a limited  income (  which most of us  do) check out  the local  food  back ,  many  now  are  carrying  gluten-free  items. Also many  churches  offer   food  certificates   to  help  low  income  people.

Another  suggestions  is to  contact  gluten-free  companies  & ask  for  coupons.  or  samples.. Many  are  willing  to help  people  in need  to  get them  healthy....

Nightshade   veggies cause  a lot  of  problems  for  so  many. Just  type  in  nightshade  &  you will get  more  info than   you  ever  cared to know...

 

Again  a  very basic  gluten-free  diet  is  what  you need  at  first .  When you  start  to  feel good  then  add  in  one  item for  a week & see  how you feel. If  no problem  keep it in  the  diet. The next  week repeat  &  do it  all over  again. If  you  feel  bad  after  a  week on  an item  don't use it.  just keep  repeating this  process  of  each  food. Or  do  testing  for  foods....if you have insurance.

Also  have  you had  your  thyroid  total panel  done? B-12, Vit D, lipid  panel,  CBC, iron ,  ferritin,  calcium ?  These  also need  completed....

 

For  the BIg  C try  miralax,  it  may  take  four  days  or  more to  get  results  but  it  is not  habit  forming...I  have  chronic  C for  years  &  years, even been  hospitalized  for  weeks  &  they  couldn't  give  much relief.... Mineral Oil is  also  good  & years  ago they  gave that to babies  . Just  a couple  of the  safer  ones to try. Drink  lots  of  pure  water.....(  not  city  water.

 

You  will get  through this  learning  phrase  &  become  more  confident..

hugs

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Thank you, you guys mentioned great tips. I have not been officially tested for celiac or thyroid, my doctor said I might have a gluten intolerance because in the past I had a gluten reaction from heating wheat cookies and had to eat for the pain to go away. I doubt he would even bother to get me tested and if I get to feel a lot better in the long run why go back and poison myself to get officially tested?

You guys mention that I may not be getting enough from my diet, what is lacking? fruits,proteins? I know I seem to get a lot of carbs, I even only eat almonds because they are the best source of protein from all the nuts which is why i don't bother other nuts like walnut or pecan because they don't contain much protein.

Egg is definitively something I will add back to my diet to fill some more protein.

 

I live with somoene who doesnt eat anything but fruit and oatmeal but I wash everything before I use it.

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I too would never go back  to  eating  gluten for  a  test  esp. if  I  felt  a  difference.. For  children I feel  different, they need the documentation  for  food  at  school but  for  adults well  we  are  adults  & we  know  when  we  feel better....You  do  need  more  protein..  a  balanced   diet. Too many  carbs  &  you get  carb  overload....as I  said  before protein , fruits  & veggies.. Legumes  are  good... For me  I  have  to have   meat  protein  , I do  eat  & drink  Almonds  but  again  I  need  the  meat  protein. I'm not  positive  why  other forms  of protein  doesn't  work  for  me but  I know  it  doesn't....

Your  body  will be  going through  some  major  changes  as  you  take  away  the  gluten, you will   have ups  &  downs  .. you will  maybe find  a lot  more things  upsetting  your  body that  you never  thought  about  before. You too  will learn  that your body is talking to you ... Learning to listen  is the hardest  part....

Gluten for  some  can be  like  an opiate. If  we  have  a  constant craving  for  an item  we  just may be  addicted to it... ie; cheese  for  many.....

Think of  your  car  it  runs  well  when  its  a well taken care of  machine. What  you put in it   determines  how  well  it  will work for you. Give it  bad  gas, no oil  &  what  happens? Break down...  this is how  how  bodies  work  as well.. Take care of it, feed  it  wholesome   foods, &  give  it  rest, exercise   it  will  go on  for  a  long  time...with  fine tuning!!!!

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I thought  I would  add this in as  for  some  people  they   think  the  foods  (fresh)  are  always  safe  .. This  is  a  great  site  for learning  what  is  going  on  in  our  food  chain. .  an  eye-opener  for  many... we  are  constantly  challenging  our  bodies  with the  foods  we  eat...our livers  are over  worked...that  is  why  we all  need to take  a look  at  what  types of  foods  we  are  fueling our  bodies  with...That   goes  for all foods.  Even organic  can  have   issues   but  not  nearly as  often  as  mainstream ...

 

 

 

http://www.foodsafetynews.com/2013/07/fdas-team-tomato-fights-contamination/#.UdwBLjrD-Uk

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    • There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body.  I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means. These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.
    •   Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.    I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.    >.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers.  Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive.    I just wish others had helped me out earlier with this disease.   PS Anonymous, you keep posting on older threads, ALOT recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be.
    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
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