Confused about DX

[Geckox]

Hi everyone...

I have not been celiac my entire life until age 27 when I contracted some kind of food poisoning. It gave me serious bowel inflammation that lasted a couple weeks. After that, I no longer had the ability to digest wheat, gluten, dairy, soy, and other random things.

They did a blood test and told me that I am not celiac.

Yet whenever I eat gluten or especially wheat, I get a gluten attack that can last for weeks. It debilitates me and I start losing weight like crazy.

My life is stringently gluten free and has been for over 3 years now, but it seems like every accidental gluten exposure I have causes worsening symptoms.

I really don't understand this. Everyone in my family can eat gluten and dairy. I am having a difficult time coping with this condition because it severely limits my lifestyle. I used to travel a lot and socialize through food and now my life is severely limited because I always have to be paranoid about what I'm eating.

My main question is... would my case be considered true auto-immune, and can I cure this? I have read tons about leaky gut and have tried many things over the years, but nothing seems to really heal this. I have heard it can take years of exposure avoidance for your immune system to forget about gluten.

In 2014 I was able to consume small amounts of gluten (like the occasional slice of pizza) if I took turmeric daily. But that doesn't seem to work now. I have also been looking into quercetin.

Is there any way possible for me to eat the occasional gluten meal without having these insane reactions? I have been so disciplined but I am getting to the point that I can't take it anymore and it's affecting my mental health. I am exhausted from having to cook every single meal at home and always having to bring safe food with me to gatherings. I also miss traveling dearly!!

Thanks in advance for reading!

[cyclinglady]

Are you sure you do not have celiac disease?  Did you just get the screening TTG IgA?  I ask because i test positive only to the DGP IgA.  The TTG is good, but does not catch all celiacs.  Learn more:

Open Original Shared Link

Oh, some people test negative to the blood tests.  And some people test negative because they are already on a gluten-free diet.  

You could have Non-Celiac Gluten Intolerance (no gut damage but all the symptoms) but there is no test for it.  

As ar as your questions about traveling, cooking meals, lack of family support, i think we can all relate.  No easy way around it.  I do travel, but I haul my food around or dine at the grocery store.  If lucky, i find 100% dedicated gluten-free resaurants or celiac-friendly ones.  

Welcome to the forum!

[squirmingitch]

I'm going to repeat parts of what cyclinglady said......

If you were gluten free when they did the blood panel then it's a no brainer that you turned up negative.

If they did not do the full celiac panel (6 tests) then you could have gotten missed.

Get a copy of your labs they did & post them here along with the reference ranges. We can tell you if those were the correct tests. Sometimes docs will say people don't have celiac because they "only" tested "low positive". A positive is a positive even if it's low.

[Geckox]

I just want to say thank you in advance for answering my questions. I'm sure they've already been asked a million times already.

The only test they did was the TTG, and yes I had already been abstaining from gluten for about 6 months by that point. Does this mean that in order to test positive I'd have to be consuming gluten? If so, how on earth would I do that without suffering horribly? Would the multi-test panel detect the disease without me having to do that?

Is it possible for someone to develop true celiac disease later in life, even if they never had it for most of their life? If I have non-celiac gluten intolerance, can it be cured?

What would be the signs of damage caused to my gut by true celiac disease vs. intolerance? And is an endoscope the only way to examine such damage?

Since 2013 I have developed inflammatory bowel disease and ulcerative colitis, but my instinct is that it's related to something happening in my small intestine. I've cut out all the offending foods humanly possible, but my bowels still aren't stabilizing. So what the heck??

A holistic doctor told me last year that if you abstain completely from gluten and have zero exposure for 4-5 years, the immune system will forget. He said I'd have to seal my leaky gut though, and I don't know what exactly that entails. I just don't get it. I went from having a relatively normal western diet to suddenly I am allergic to everything, all after one food poisoning incident!

If you could point me to some key words that I could research, I would appreciate it. I am determined to fix this no matter what it takes!

THANK YOU!!

[Ennis-TX]

I did not have any major symptoms growing up, just minor ones and stuff I thought was normal. After a similar shock to my system like what you had it came up extreme and I spent a few years thinking I was dying before we got it down.    I am now hyper sensitive to gluten in foods and my immune system developed a bunch of other allergies, along with certain food intolerance. Some of these have gone away or lessened, while others have randomly cropped up.

On the testing I think someone will find you the link, we call it a gluten challenge where you eat small amounts of gluten (half a slice of bread or a cracker) once a day. 12 weeks for blood test and 2 weeks I think was the suggestion for endoscope so when tested it shows up positive that you immune system is responding to gluten. Now on a personal note I react so bad this would have me in the ER, but if you can tolerate it you can get a official diagnosis.

I get the whole getting depressed, put down, tired of cooking 3-4hours a day for a fresh cooked meal. Not being able to eat out much due to the threat of getting poisoned at restaurants bars etc. is a bit more of a issue for me due to my allergies (highly allergic to corn and a few other issues). Some of the things I have done to feel a tad more normal are odd and sad. I look at it as it has made me a damn good cook, and I eat a bit healthier then most. Few bright sides to it, you say you have celiacs when you go to a theme park and they will let you bring in your own food most of the time since nothing they have they can guarantee is safe, and ends up saving you money. I also found big batches of a base bland soup then each day using different seasonings in it when you reheat it works great in the winter for quick meals.

I post a few recipes every now and then on foods that I use for comfort or just cause here. You will also find we discuss our issues, and how we deal them here constantly to help support others and find answers. Your bound to find a whole bunch of useful information on this forum and great support from the members,

[GFinDC]

Hi geckox,

Your are right, the celiac disease testing process is crappy.  If you aren't eating gluten for awhile before the testing then the testing is useless.

NCGS does not cause gut damage.  Celiac disease does.

You can't get rid of your immune response by not eating gluten for 5 years.  I've been gluten-free for 9 years and I still have celiac disease.   Think about it, if that were true there would be no point in getting vaccinations as a kid.  If they only lasted 5 years we'd all be getting refresher vaccinations through out our lives.

Most of the leaky gut info on the web is related to an attempt to sell some cure or other that doesn't work.  If you want to understand leaky gut, find some articles by Dr. A. Fassano, he discovered it.

Yes, you can develop celiac disease at any age in life.  Some people are diagnosed young, some are diagnosed when they are older.

If you do have other gut conditions like ulcerative colitits, that is not going to go away by eating gluten-free.  But you can have celiac disease and Crohn's or other conditions at the same time.

Celiac disease testing is not perfect.  It requires that the person be eating a gluten diet for 12 weeks for blood tests and 2 weeks for endoscopy.  Those periods of time are called a gluten challenge.  That isn't possible to do sometimes because of pain etc.

Welcome to the forum Geckox!

[squirmingitch]

And as far a medical science has been able to figure yet, if you have NCGS it is a life long condition as well. You can't "cure" either celiac or NCGS. They are still researching NCGS to try & come up with a test for it but at this time there is none; they also suspect NCGS does neurological damage even though not damaging the gut like celiac or some suspect that it is more or less a precursor to "testable" celiac. There isn't a lot of concrete medical info./studies on it that the medical community can base solid answers on yet.

Did you know that there is such a thing as silent celiac disease? There is. No symptoms what so ever and yet the patient's villi are damaged. We've had members on here whose gut was so damaged they had zero villi left and yet they had zero symptoms so it goes to show you that you can't always base celiac on symptoms. I'm talking about you saying no one in your family has celiac when I relate that information. Also there are some 300 symptoms associated celiac disease. That is not to say if one has 1, 2, 3, 4, or even 5 of those symptoms that they have celiac disease but there are that many symptoms associated.

Google Chicago Celiac Disease Center. Their site is a wealth of information. They have a search feature or you might just want to read the FAQ's.

[cyclinglady]

12 hours ago, Geckox said:

I just want to say thank you in advance for answering my questions. I'm sure they've already been asked a million times already.

The only test they did was the TTG, and yes I had already been abstaining from gluten for about 6 months by that point. Does this mean that in order to test positive I'd have to be consuming gluten? If so, how on earth would I do that without suffering horribly? Would the multi-test panel detect the disease without me having to do that?

Yes, you have to consume gluten for 8 to 12 weeks leading up to the celiac blood tests.  You can understand why many choose not to do a challenge (like my hubby) because once gluten free they feel better.  If they consume gluten, it makes them very sick.  Those who challenge do so because they really need a firm diagnosis.  It is often hard to maintain a gluten-free diet with out proof for many.  The multi-panel test still requires you to be on a Gluten diet.  

Is it possible for someone to develop true celiac disease later in life, even if they never had it for most of their life? If I have non-celiac gluten intolerance, can it be cured?

Celiac disease can develop at any time.  There is no cure for celiac disease or a gluten intolerence.  My hubby has been gluten-free for 15 years and gluten still makes him sick.  Like you, he did not get a diagnosis. He went gluten free per my allergist and his primary care physician (poor advice). 

What would be the signs of damage caused to my gut by true celiac disease vs. intolerance? And is an endoscope the only way to examine such damage?

Endoscopy to obtain biopsies is the only way to check for celiac disease.  A pill camera might catch it, but there are risks if you have IBD (could get stuck).  Plus, you would have to be eating gluten for 2 to four weeks prior to the Endoscopy (much less than the blood test) and you would need to insist they biopsy for celiac disease because you do not have the celiac blood test to indicate the possbility of celiac disease.

Since 2013 I have developed inflammatory bowel disease and ulcerative colitis, but my instinct is that it's related to something happening in my small intestine. I've cut out all the offending foods humanly possible, but my bowels still aren't stabilizing. So what the heck??

My niece tested negative (full panel) for celiac disease.  She was just diagnosed with Crohn's which can affect the ENTIRE intestinal tract.  I am trying to encourage her to go gluten-free as it might reduce flare-ups.  C D is the ONLY AI that has a known trigger -- gluten.  Other AI issues do not.  Doctors supect virus, bacteria stress....the list goes on.  So, healing from celiac disease is possible if one adheres to the gluten-free diet.  No drugs needed.  If i had IBD i would strongly recommend researching the benefits of a gluten-free diet.  It can not hurt (unlike drugs) as the diet encourages whole natural foods.  

A holistic doctor told me last year that if you abstain completely from gluten and have zero exposure for 4-5 years, the immune system will forget. He said I'd have to seal my leaky gut though, and I don't know what exactly that entails. I just don't get it. I went from having a relatively normal western diet to suddenly I am allergic to everything, all after one food poisoning incident!

Google Dr. A. Fasano and zonulin.  These are proteins which act or open the gates for intestinal permabiltiy (leaky gut).  Celiacs have too many zonulin and they malfunction (leave the gate open for too long -- hence maybe intolerances).  Not sure you can ever resolve this as it seems to be genetic.  I guess someday....but not in my lifetime.  Dr.Fasano says we just don't know and that his research is just the tip of the iceberg in learning about the gut.  

If you could point me to some key words that I could research, I would appreciate it. I am determined to fix this no matter what it takes!

THANK YOU!!