What Gluten Tastes Like After Three Years...

[amberlink09]

Hey everyone,

I went to the GI on Thursday and told him i had never actually felt better after being diagnosed celiac three years ago and he went through my tests and told me that it really didn't look like I had Celiac. So I'm getting my gets redone and I'm back on gluten for a few weeks. I know we all dream of gluten filled bread and pasta, so this was pretty exciting news to me. I think my tastes have changed though, while everything I've tried has been good, it really hasn't been impressive or anything like what I'd built it up to be in my head. I just thought this might be interesting to share with everyone!

[Lisa]

Hey everyone,

I went to the GI on Thursday and told him i had never actually felt better after being diagnosed celiac three years ago and he went through my tests and told me that it really didn't look like I had Celiac. So I'm getting my gets redone and I'm back on gluten for a few weeks. I know we all dream of gluten filled bread and pasta, so this was pretty exciting news to me. I think my tastes have changed though, while everything I've tried has been good, it really hasn't been impressive or anything like what I'd built it up to be in my head. I just thought this might be interesting to share with everyone!

May I ask how you were diagnosed three years ago?

[Monklady123]

Hey everyone,

I went to the GI on Thursday and told him i had never actually felt better after being diagnosed celiac three years ago and he went through my tests and told me that it really didn't look like I had Celiac. So I'm getting my gets redone and I'm back on gluten for a few weeks. I know we all dream of gluten filled bread and pasta, so this was pretty exciting news to me. I think my tastes have changed though, while everything I've tried has been good, it really hasn't been impressive or anything like what I'd built it up to be in my head. I just thought this might be interesting to share with everyone!

But if you "never felt better" after being off gluten then why would you go back on it? Why does it matter if you "officially" have celiac? If you feel better off gluten then clearly you are gluten intolerant. So why go back?

[MitziG]

After being gluten free for three years, it will likely take much more than a few weeks of eating gluten to get a positive test or to show endoscopy damage. Seriously...they don't hand out a celiac dx easily. If you were dx before, you had it then, and you have it now. But your new tests will likely not back that up. I am pretty confused as to why you are letting one doctors ignorance cause you to open this can of worms?

[amberlink09]

I never felt any better when I went off gluten, I have only gotten worse for the past three years. And honestly I don't see any difference eating gluten now. I was diagnosed by a blood test and endoscopy, but I just now found out that there was no damage to my vill, but the biopsies showed inflammation in my small intestine so they diagnosed me with celiac. I might just have celiac and something else, but not eating gluten has never helped me to feel better. So, I'm having my endoscopy redone and having a colonoscopy, eating gluten again is just kind of a trial for me.

[Takala]

"We" don't all dream of gluten filled bread and pasta.

I'll never have the official diagnosis because of medical malpractice, but at least I'm not dead yet, not in a wheelchair, nor looking for excuses to keep being sick.

[Lisa]

I never felt any better when I went off gluten, I have only gotten worse for the past three years. And honestly I don't see any difference eating gluten now. I was diagnosed by a blood test and endoscopy, but I just now found out that there was no damage to my vill, but the biopsies showed inflammation in my small intestine so they diagnosed me with celiac. I might just have celiac and something else, but not eating gluten has never helped me to feel better. So, I'm having my endoscopy redone and having a colonoscopy, eating gluten again is just kind of a trial for me.

Even though you had a positive blood work and endo it might be a good thing to be retested. Anytime anyone has digestive issues, it's good to re-visit from time to time.

The gluten free diet is very complicated. Many people feel that just removing bread, pasta and beer from their diet is adequate. And many seem to be surprised that gluten is in lip products, lotions, medicines and many other hiding places.

And, ummmm.....have a really good piece of fried chicken for me. I haven't mastered the gluten free version, as of yet. OH and Angle Food Cake!

[1desperateladysaved]

I dreamed I was eating bread the other night. Only in my dreams I thought!

[Victoria6102]

If doctors don't know much about celiac (which clearly they don't) then maybe they were wrong. Your stomach can be inflamed for many reasons. Damage to villi is the clear marker of celiac. You might wanna eat gluten for a few months before you get tested to make sure it's accurate though:) monk lady, just as a side note, she said she DIDNT feel better when she ate gluten free. hey, if you don't have celiac and the docs were wrong, Ill be happy for you, celiac is no fun! Let us know how it goes

[Adalaide]

At first I dreamt of bread, but I don't any more. I was talking to a friend today who was diagnosed as a child, and she doesn't even think of bread as food. Honestly, although it's only been 7 months, neither do I. If I hadn't ready my biopsy report myself, I would probably hope that there was a mistake because while it gets easier, it is still hard. The constant worry about CC, spending half my life reading labels.

If there is a chance that you really don't have this horrid disease, I say shoot for the stars. It isn't about the food for me, it's about so much more than that. So much I wish we could all escape.

[justlisa]

Interesting... I am eager to learn more about your previous dx and upcoming testing.

[Monklady123]

I never felt any better when I went off gluten, I have only gotten worse for the past three years. And honestly I don't see any difference eating gluten now. I was diagnosed by a blood test and endoscopy, but I just now found out that there was no damage to my vill, but the biopsies showed inflammation in my small intestine so they diagnosed me with celiac. I might just have celiac and something else, but not eating gluten has never helped me to feel better. So, I'm having my endoscopy redone and having a colonoscopy, eating gluten again is just kind of a trial for me.

Ah okay, sorry, I misunderstood your first post. I thought you were saying "I've never felt better" as in "I feel great!" lol...That's why I couldn't understand why you'd go back to eating gluten if you felt so good.

[Darn210]

You say your blood test was positive though? . . . that's significant . . . and I agree that you need more than just a couple of weeks on gluten. If you are positive that you've eliminated gluten from your diet/meds/toiletries, then you should investigate further.

Lisa, come to my house for fried chicken.

[Bubba's Mom]

Have you been tested for small intestine bacterial overgrowth(SIBO)? If you had it when you were DXed with Celiac and nothing was done to normalize your gut flora, it could be what's making you feel bad?

[Cara in Boston]

After three years of being gluten free you need to be eating gluten for MUCH longer than a few weeks before being tested again. My doctor (celiac researcher and specialist) told me 6 months after only 2 weeks of being gluten free. I would imagine that after three years, you would need quite a while to develop any measurable damage. Your tests will come back negative, which I'm guessing will sound like good news. It will NOT mean you do not have celiac. You could be setting yourself up for years and years of poor health and irreparable damage. Your doctor advising you that a few weeks is enough clearly indicates his/her lack of knowledge about celiac disease. You are not getting good care, you need to find another doctor.

By all means, explore the possibility that it could be something else. Continuing to be gluten free will not effect ANY tests for other possible causes of your continued symptoms. But again, find a doctor who is current in their knowledge about celiac disease.

Cara

[Mom-of-Two]

^^^^^ Agree!!!! You are not getting good advice!

[cavernio]

Huh.

I was gluten-free for 2.5 months and then ate gluten for 3mo (and one week in there I didn't have any either) and my intestines looked so bad he didn't even need the biopsy. I'm certain that some people need more time though, and it seems likely 3 months wasn't nearly enough time for me to heal properly. There's lots of controversy around what time is needed, but it DOES makes sense to eat it for the longest period of time needed when really questioning the diagnosis.

Did you try being soy or dairy free or anything like that during the past 3 years? Because every new piece of research I read it just seems more and more likely that gluten is just the scratch of the surface for many celiacs. Plus all the people on here who know they have other food intolerances. And personally, if I hadn't dropped dairy I'm not sure I'd be noticing any difference in myself either. Again though, very new research, past 5 to 10 years, and many doctors aren't necessarily up on it.

It is very odd to have a high IgA and have no celiac disease. The GI said they didn't see any dmg but saw inflammation, well, that's still officially celiac disease from what I've read. Like if they caught it early on I'd think that your biopsy makes sense. What other explanation does the GI have for the high IgA? Anything beyond lab error?

The doctor could also be using 2 weeks just for her/him to perhaps notice a change of their own too. Like maybe it seems like the OP hasn't gotten any better (sorry can't see ur name atm) but when you start eating gluten again, you'll actually start to feel worse again.

[GFinDC]

Hi Amber,

I suggest you start a journal to log your symptoms if any during your gluten experiment/challenge. Note anything that changes in your health and mental state. So recording your mood as well as physical symptoms. That kind of information is not something a doctor will be aware of, and it might help you decide if gluten is affecting you.

Have you tried eliminating some of the other foods that can bother us? Things like oats, soy, corn, eggs, alcohol etc? Checked all your vitamin pills and meds, coffee, tea etc for gluten?

Have you had your thyroid function checked out?

Blood sugar?

How about vitamin and mineral levels? Are they in normal ranges?

Sorry for the 20 questions, I thought they might help you think about some areas that could be affecting your recovery.

Oh, and thanks for the report on the taste of the gluten after 3 years. Hah, just what I thot! The stuff doesn't really taste that great anyway.

[amberlink09]

Wow so many questions! I think that if I do decide to go ahead and really take the Celiac re-diagnosis seriously I might try this for a month or two and then get my blood work redone. I have had headaches since eating gluten again, but my stomach is in such awful shape I can hardly tell the difference there. As it stands now though, I have an endoscopy and colonoscopy scheduled on the 24th, and since it takes forever to schedule these things I don't want to wait anymore. Also, here are my original blood results if anyone is interested:

Gliadin IgG- 13.4 (Normal <10)

Gliadin IgA- 0.9 (Normal <5)

TTG IgG- 0.4 (Normal <6)

TTG IgA- 0.5 (Normal <4)

My doctor said that they have now replaced the Gliadin IgG test because it's not very reliable, and this is one of the reasons that he suspected my tests weren't right. I actually cried over possibly not having Celiac, because giving up gluten is a way of life for me now and knowing that that's all I have to do to feel better is comforting. But, at the same time, I've never gotten better, and over the last two years I've only gotten worse. I'm only 21, and while I was sick for 6 years before diagnosis, I should have healed from my Celiac damage pretty quickly, especially if I had no villi damage. I think it's highly probable that I have Celiac and something else, but I'm really fighting against an IBS diagnosis at this point because I've tried all the recommended diets and medications for IBS and nothing has helped. Here's what I've tried so far:

High fiber and low fiber diets and fiber supplementation

Xifaxan for SIBO

Apriso for reducing inflammation

Low dose anti-depressants for IBS

Muscle relaxers that release in the intestines for IBS

The specific carbohydrate diet

And I've been on the Paleo diet for 10 months now, it helped me feel great for about 3 months then everything went downhill again.

Eliminating all possible sources of gluten and cross contamination.

An elimination diet that showed me no results.

Also, I've had my thyroid checked multiple times and it's normal. I have remained anemic since diagnosis though, and my recent blood tests have shown I am also now deficient in Vitamin B12 and Vitamin D. I eat paleo, so my diet is kind of centered around meat, which means my iron and vitamin B levels should be pretty high but they aren't. I am now getting shots to correct the vitamin B levels, but my doctor refuses to give me a complete vitamin/mineral workup.

I think that's everything, let me know if you have other suggestions. Thanks! Amber

[RonSchon]

When I purposefully had gluten to "make sure", wow - crippled with stomach aches, bloated instantly, major joint pain, and actual bile trying to come up my throat - like maybe whatever acid reflux is?

I'm definitely intolerant, hopefully Celiac (so I can get FMLA at work). Kind of stinks that I have to "hope" for it, but I need the FMLA protection. Blood test today.

[Salax]

Amber, have they ever tested you for Crohns disease? With the inflammation in the small intestines (which is usually the generalized area of Crohns, although it can affect the entire digestive system) with the anemia and some of the other stuff you mentioned it almost sounds like it could be an IBD rather than something else. Are you also suffering frequent bathroom trips? D? That's a good indicator as well.

I hope you feel better. I am going through something similar right now as well. Although I felt better on the gluten-free diet for about 2 1/2 years. Been gluten-free for 3 years as well. I am since Jan 2012 been extremely ill. And on the verge of heading to the Mayo Clinic. I keep getting the IBS crap too and on and off they keep thinking it's Colitis. But I have massive inflammation in my small and large intestines. Low iron, stomach pain (horrible, especially in the morning), constant D and weight loss.

I have removed Dairy, Meat, uncooked veggies, chocolate, caffeine, nightshades and of course still gluten-free. But it seems to have no consistency to the pain.

Anyways I hope they figure it out soon. I feel for you.

[sreese68]

What kind of elimination diet did you try? I used FODMAPS, and it helped me identify that fructose and sorbitol are problems for me. They can be found in a variety of fruits and veggies, so unless you're eliminating those specific categories, it can be hard to pinpoint.