Does Gluten Intolerance Mean 100% gluten-free?

[jayman6]

I have had all the tests for celiac done and they have been negative, except for my biopsy which showed some "minor features consistent with celiac." Many times I eat things like pizza and white bread just fine and have no problems. I'm wondering if just cutting back on gluten might help my symptoms, or if I really have to go 100% gluten free. If I am really gluten intolerant, why am I able to handle things like pizza, white bread, and other products with gluten in them with no problems? Is this a sign that gluten is not my problem? Thank you.

[BlessedMommy]

If you have a positive biopsy, it's quite possible that you have celiac.

 

Are there any clues other than the biopsy that your doctor could use? Have you had genetic tests done? When you got your blood tests, did they check your total IGA levels?

 

Have you been checked for any other medical conditions? The intestinal damage is concerning. No symptoms definitely doesn't always mean that you don't have a problem with gluten. I would not rule it out until there's further investigation.

[jayman6]

  On 5/23/2014 at 3:42 PM, BlessedMommy said:

If you have a positive biopsy, it's quite possible that you have celiac.

 

Are there any clues other than the biopsy that your doctor could use? Have you had genetic tests done? When you got your blood tests, did they check your total IGA levels?

 

Have you been checked for any other medical conditions? The intestinal damage is concerning. No symptoms definitely doesn't always mean that you don't have a problem with gluten. I would not rule it out until there's further investigation.

 

Thanks for the reply. I had 4 different blood tests all checking IGA and IGG and all were negative. The doctor said that the result was not conclusive and that the biopsy was not positive. He used the word "suggestive." I have not had genetic tests done but nobody in my family has celiac. I had an endoscopy and colonoscopy that were both negative for other medical conditions. The doctor thinks that if the gluten free diet doesn't work that I have IBS, but I am wondering if it is even worth trying the gluten diet when I seem to handle gluten just fine. I just randomly get flareups that don't seem to be related to any particular food.

[nvsmom]

Welcome to the board.

 

Symptoms (how you feel) have a very low correlation to the damage being done inside of your body. Consider a flu virus, one person may get a fever for a week, coughes, migraines and aches, and then another person with the same virus may be just a bit fatigued for a day and sneeze a few times - same virus but different symptoms. The same thing goes for celiac disease: some of us react violently every time, others (like me) do not react as violently but have symptoms grow in severity over repeated exposures, and yet others have no symptoms at all and never had or the symptoms they do have are not GI related (like my cousin who was diagnosed based on ADD).

 

If you have celiac disease, you can not have any gluten. Ever. You will be damage=ing yourself and setting yourself back a few weeks every time a crumb gets into your system. Even if you feel fine, there is damage and systemic inflammation going on that can not be felt or seen.

 

As for your biopsy, did the doctors offer any other possibilities that caused the damage besides celiac disease (or early celiac disease)? It is not rare to have positive biopsy and negative tests or vice versa. It happens.  Unless the doctor has said otherwise, a positive is a positive and you'll have to eat gluten-free to ensure your health does not deteriorate.

 

Best wishes.

[nvsmom]

Ooops. We posted at the same time.

 

These are the celiac tests that can be done:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG
• EMA IgA
• AGA IgA and AGA IgG (older and less reliable tests)
• total serum IgA (a control test only)

Do you you know which of those tests were done?

[BlessedMommy]

Keep in mind, that celiac may run in your family, the people who have it might be just undiagnosed. That's why it may be worth running the genetic test to evaluate your risk if the other tests are inconclusive.

[jayman6]

  On 5/23/2014 at 3:50 PM, nvsmom said:

Ooops. We posted at the same time.

 

These are the celiac tests that can be done:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG
• EMA IgA
• AGA IgA and AGA IgG (older and less reliable tests)
• total serum IgA (a control test only)

Do you you know which of those tests were done?

 

Online, it shows my test results and all it says is that these tests were done (all were negative): 

 

GLIADIN IGA AB (DEAMIDATED)

GLIADIN IGG AB (DEAMIDATED)

TISSUE TRANSGLUTAMINASE IGA AB

IGA

 

I'm not sure if this is helpful to you?

[nvsmom]

  On 5/23/2014 at 4:01 PM, jayman6 said:

Online, it shows my test results and all it says is that these tests were done: 

 

GLIADIN IGA AB (DEAMIDATED)

GLIADIN IGG AB (DEAMIDATED)

TISSUE TRANSGLUTAMINASE IGA AB

IGA

 

I'm not sure if this is helpful to you?

 

Those are the best tests to be run. I was concerned that the doctor had just run total serum IgG and IgA - some have done that.

 

If a test is going to catch celiac disease, those are the ones.  You appear to be one of the few seronegative celiacs.

 

Perhaps try keeping a food and symptom journal to help you keep track of how the gluten-free diet is affecting you. Sometimes it helps with seeing the patterns. Many celiac disease symptoms are slow to leave and can take months. Keeping track of how you feel helps when things can be slow to change - most people need 3-6+ months to really start feeling good and to stop having setbacks.  Give it time before you judge the diet's effectiveness.

[KMMO320]

  On 5/23/2014 at 3:38 PM, jayman6 said:

I have had all the tests for celiac done and they have been negative, except for my biopsy which showed some "minor features consistent with celiac." Many times I eat things like pizza and white bread just fine and have no problems. I'm wondering if just cutting back on gluten might help my symptoms, or if I really have to go 100% gluten free. If I am really gluten intolerant, why am I able to handle things like pizza, white bread, and other products with gluten in them with no problems? Is this a sign that gluten is not my problem? Thank you.

I have been gluten free for almost 2 years. A while ago, I decided to have a regular gluten filled muffin. I was fine. I was fine all night. I was fine the next day. Sweet. So 2 days later, I had another muffin. Again i was fine. 2 days later, I had another one. I WAS NOT FINE. OMG WAS I SICK!  I had been hoping that somehow I was cured, or that I had grown out of having Celiac Disease. but that third time eating gluten, I was sick. My symptoms don't last long. Many people get violently ill. I don't, but I know my body and I knew I wasn't well. Luckily, I am able to take some tylonal, a hot shower and sleep it off. But even that minor thing is hard for me and my family when I have stuff to do. I can't always be going to bed because I wanted to eat gluten. So I just stay away. 

My biopsy came back negative, so I don't know if I actually have celiac disease or intolerance but my Dr was willing to make the celiac disease diagnosis, so I treat myself like I have it. 

[jayman6]

Thank you to all of those who posted. I started a gluten free diet again and am just wondering a few things. I've read online that even the smallest amount of gluten can be problematic, but if I'm wondering if that is true for everyone or just people with extreme sensitivity to gluten. Given that my blood test were negative and my biopsy was inconclusive, if I ingest a small amount of trace gluten in something is that really going to set me back? I ask because in order to evaluate my diet I need to know whether eating out at a restaurant where my food might come into contact with something harmful could really throw the entire gluten free diet off so that even if I go 2 months without eating gluten I could still be having problems resulting from the trace gluten. I'm not sure if I am making sense, but if anyone can give insight into this, I would appreciate it.

[Questore]

  On 5/24/2014 at 7:22 PM, jayman6 said:

Thank you to all of those who posted. I started a gluten free diet again and am just wondering a few things. I've read online that even the smallest amount of gluten can be problematic, but if I'm wondering if that is true for everyone or just people with extreme sensitivity to gluten. Given that my blood test were negative and my biopsy was inconclusive, if I ingest a small amount of trace gluten in something is that really going to set me back? I ask because in order to evaluate my diet I need to know whether eating out at a restaurant where my food might come into contact with something harmful could really throw the entire gluten free diet off so that even if I go 2 months without eating gluten I could still be having problems resulting from the trace gluten. I'm not sure if I am making sense, but if anyone can give insight into this, I would appreciate it.

 

Some people can get a mere crumb of gluten filled food, and suffer agonies, while others don't feel anything, but have the same damage.  Gluten is a protein that many humans cannot digest, and they affect the interior of the upper GI just as if the lining was burned.  All the miniscule fingers that stick up from the intestines (villi) are burned off...often very patchily, so that even a biopsy can miss it.

 

Only 30% of the people who have a blood test actually are diagnosed for Celiac, but if you continue to have problems, you need to have your genes tested, and have gluten sensitivity testing done, which can be quite as bad as having Celiac in it's effect on the rest of your body, and the uptake of nutrients.  And there are other foods you can have immune responses to, also, so you can't just through up your hands, and bear it. 

 

Please, keep investigating...it's your health, not the Doctor's.  Start a food and reaction diary...it is amazing what it points out that you would never suspect.  And see a Nutritionist/Naturopath if the Doctors can't find an obvious answer.  Your food is supposed to have the nutrition in it your body needs, but it sometimes has irritants that you don't need.  And please...skip all processed food...it's filled with chemicals that no one knows is safe!

[FruitEnthusiast]

I'm non-Celic Gluten Intolerant according to the blood test, but still I have been trying to recover for two years, and many others have the same experience. It's taken away my ability to live any kind of normal life - I'm just too sick to participate in much of anything. I would hate to see that happen to you. You feel ok now, but repeated exposure can do damage as was mentioned. I hope you'll take this seriously so you don't end up really sick like a lot of us have. Protect your good health while you have it. Once you lose it, it's a long road back.