Don't want to do gluten challenge..

[Bree J]

I've been eating gluten free for 4 years.

I took a blood test without knowing I needed to be eating gluten (doctor didn't have any clue.), so naturally it was negative (pretty high ttgIga levels though, for a no gluten diet).

If I eat even seasoning with flour in it or a tortilla chip fried in cross-contaminated oil, I'm sick for 2 days. So is my dad, his brother, and 2 of his neices. None of us have been tested for celiac, we just stopped eating gluten and it helped.

I am wondering if I should be as careful as someone with celiac, or if I should only focus on avoid foods that hurt my stomach? I know celiac is an autoimmune disorder and I don't want bad things to be happening inside me without me actually feeling pain from it.

If I don't want to do a gluten challenge for a blood test (i would be so sick...have to be out of work...malnourished)...am I SOL for knowing if I might have celiac? 

I've done a lot of online research and I do have many other reported side effects: acne, joint pain, headaches, bloating, rash (does not blister, though. Maybe because I'm not eating gluten in big amounts?), sometimes feeling like I have a stomach ulcer, etc. These are all light symptoms usually after I eat at restaurants and get "no bun" or whatever else, but still eat the french fries. Some are all the time, though, like acne and headaches. Im a very healthy person btw (even though i eat french fries )

I know I probably sound stupid, not wanting to do what I can to get tested, but I just want to check and see if my story can get anyone to say "nope def not celiac" or not.

Also: I sometimes drink beers without wheat, usually have barley, (Fat Tire, Corona) and my stomach does not hurt. However, it bloats a little. When I have Mike's (gluten-removed) my stomach hurts.

[tessa25]

57 minutes ago, Bree J said:

I took a blood test without knowing I needed to be eating gluten (doctor didn't have any clue.), so naturally it was negative (pretty high ttgIga levels though, for a no gluten diet)

By pretty high TTG IGA levels, do you mean your level was higher than the normal range? If so, there's your answer.

 

[Bree J]

The test I took said less than 20 U/mL is normal. I had 8. Which I know is less than 20 by far. But all my other levels were less than 1. Maybe I'm just psyching myself out looking for an answer anywhere.
I guess what I'm wanting to know is if a blood test is completely useless without gluten in the body, or if any sort of elevation can be interpreted as something? I'm just kinda mad that no one told me it only really works when you have been eating gluten.
I know (from more research) that a biopsy of your small intestine can let you know, too, but that's so expensive, and without a positive blood test I don't think a doctor would refer me.

[Bree J]

What's got me thinking I might still have to worry about celiac, even though I've been gluten-free for 4 years: Open Original Shared Link 

[kareng]

1 hour ago, Bree J said:

The test I took said less than 20 U/mL is normal. I had 8. Which I know is less than 20 by far. But all my other levels were less than 1. Maybe I'm just psyching myself out looking for an answer anywhere.
I guess what I'm wanting to know is if a blood test is completely useless without gluten in the body, or if any sort of elevation can be interpreted as something? I'm just kinda mad that no one told me it only really works when you have been eating gluten.
I know (from more research) that a biopsy of your small intestine can let you know, too, but that's so expensive, and without a positive blood test I don't think a doctor would refer me.

Sounds like the blood test is useless in your case.  Some times people have elevated antibodies for a few months after gluten-free.  

The tests have a range for normal because it is normal to have  those numbers.  Two months from now, they may be slightly different.  There are other things that can cause low levels on these tests.  

[GFinDC]

The gluten challenge is 12 weeks of eating gluten for the blood antibodies tests and 2 weeks for the endosocpy.  There is also the test for DH (dermatitis herpetiformis) which is a skin biopsy.  DH causes a rash on the body, often in a symmetrical pattern.  The IgA antibodies are deposited in the skin and cause the rash.  They test for DH by taking a small skin sample from next to a lesion, not on a lesion.   Going to a dermatologist who is familiar with celiac disease/ DH could be an option.

Check around your area to see if you can find a dermatologist that other people with celiac disease and DH have seen.  Sometimes hospitals have celiac support groups and you might find some doctor recommendations from them.

Celiac disease is not easy to diagnose but if you aren't eating gluten it is pretty much impossible to diagnose.  That may change in a few years as there were new tests being talked about that may be able to do diagnosis without a gluten challenge.  But they aren't available yet.

 

[cyclinglady]

15 hours ago, Bree J said:

What's got me thinking I might still have to worry about celiac, even though I've been gluten-free for 4 years: Open Original Shared Link 

This goal of this site is to sell you something.  There are many celiacs struggling to heal for a variety of reasons.  But in your case, you should consider a gluten challenge because you are doubting your self diagnosis.  My hubby has been gluten free for 17 years.  He never cheats.  He KNOWS that gluten makes him sick and he is well now.  You do not seem to be so sure and you have not gotten better.  

Consider a challenge or really go gluten free.  It seems like you take many risks like drinking beer (barley does have the type of gluten celiacs react to).  Consider not eating out and avoiding processed foods for a few months.  If you do not heal, then it might not be celiac disease.  Look for something else as the cause of your symptoms.  

[kareng]

16 hours ago, Bree J said:

What's got me thinking I might still have to worry about celiac, even though I've been gluten-free for 4 years: Open Original Shared Link 

Wow!  Looking at the info in the "about" section on these guys it appears that I am at least as qualified as they are to sell you a "cure".  ?

 

One of them claims to have a bachelor of Science but it an electrical engineer - I have a bachelor of science and its actually has to do with human medicine.

One of them catches fish - I have caught fish

One has Celiac - I have Celiac

While I haven't been to Montana - I have stood on top of mountains

I have been to Hawaii, too.

I am also 60 pounds heavier and have cuter glasses.

 

All kidding aside - while they may have some good ideas or recipes, they have no actual medical or scientific training and just want to sell you stuff.

 

 

[Bree J]

1 hour ago, cyclinglady said:

This goal of this site is to sell you something.  There are many celiacs struggling to heal for a variety of reasons.  But in your case, you should consider a gluten challenge because you are doubting your self diagnosis.  My hubby has been gluten free for 17 years.  He never cheats.  He KNOWS that gluten makes him sick and he is well now.  You do not seem to be so sure and you have not gotten better.  

Consider a challenge or really go gluten free.  It seems like you take many risks like drinking beer (barley does have the type of gluten celiacs react to).  Consider not eating out and avoiding processed foods for a few months.  If you do not heal, then it might not be celiac disease.  Look for something else as the cause of your symptoms.  

Thank you -- I will first try to be 100% gluten free. I've been trying to learn what that means in my free time, but if anyone has a good resource of everything to avoid that would be helpful. Yesterday I opted not to have a gluten-free crust pizza at a restaurant because they don't use separate ovens or certified gluten-free toppings, so I'm starting out good I think, haha.

Thanks for the help. Just feeling pretty stupid lately, probably because there are so many symtoms of celiac but not everyone gets all of them, so my brain is telling me "you have, you don't have it" on repeat. I should stop browsing the internet and maybe get a book written by a medical professional. 

[GFinDC]

24 minutes ago, Bree J said:

Thank you -- I will first try to be 100% gluten free. I've been trying to learn what that means in my free time, but if anyone has a good resource of everything to avoid that would be helpful. Yesterday I opted not to have a gluten-free crust pizza at a restaurant because they don't use separate ovens or certified gluten-free toppings, so I'm starting out good I think, haha.

Thanks for the help. Just feeling pretty stupid lately, probably because there are so many symtoms of celiac but not everyone gets all of them, so my brain is telling me "you have, you don't have it" on repeat. I should stop browsing the internet and maybe get a book written by a medical professional. 

Hi Bree,

You need to avoid wheat, rye, and barley, including malt.  It is best to avoid oats and dairy for a few months at the start of the gluten-free diet.  Personally I would avoid soy also.

The best thing though is to just stop eating processed foods for a few months at least.  And don't eat in restaurants and also cook your own meals.  A simpler diet is best for healing.  Plus if you are getting sick from a food ingredient it is simple to figure out.  Eating processed foods (like gluten-free pizza) etc you could take in 100 more ingredients in a day.  That means you have to figure out which of those 100 ingredients is making you sick.  Not an easy task.  So I suggest you simplify your diet and learn the easy/fast  way.  Eating out at restaurants will slow your healing/learning down.

It is better to take some food with you if you are going out.  Nuts, fruit, hard boiled eggs are easy to carry around.

[Bree J]

2 hours ago, GFinDC said:

Hi Bree,

You need to avoid wheat, rye, and barley, including malt.  It is best to avoid oats and dairy for a few months at the start of the gluten-free diet.  Personally I would avoid soy also.

The best thing though is to just stop eating processed foods for a few months at least.  And don't eat in restaurants and also cook your own meals.  A simpler diet is best for healing.  Plus if you are getting sick from a food ingredient it is simple to figure out.  Eating processed foods (like gluten-free pizza) etc you could take in 100 more ingredients in a day.  That means you have to figure out which of those 100 ingredients is making you sick.  Not an easy task.  So I suggest you simplify your diet and learn the easy/fast  way.  Eating out at restaurants will slow your healing/learning down.

It is better to take some food with you if you are going out.  Nuts, fruit, hard boiled eggs are easy to carry around.

Thank you so much!! I'm going to start today. 

[RMJ]

Here is one book by a medical professional.  Dr. Crowe is the current president of the American Gastroenterological Association and my doctor.

Open Original Shared Link

Here is another one, Dr. Fasano is another well-respected expert in celiac.

Open Original Shared Link

 

[Bree J]

44 minutes ago, RMJ said:

Here is one book by a medical professional.  Dr. Crowe is the current president of the American Gastroenterological Association and my doctor.

Open Original Shared Link

Here is another one, Dr. Fasano is another well-respected expert in celiac.

Open Original Shared Link

 

Wow, thank you so much!! This helps a lot. Good community here, glad I found it.