My Blood test came back Positive for celiac, very confused now

[squirmingitch]

I don't know why you say your results were negative. The TtG IgG is absolutely positive.

None of it matters if you are going to go gluten free anyway.

 

[shad]

14 minutes ago, squirmingitch said:

I don't know why you say your results were negative. The TtG IgG is absolutely positive.

None of it matters if you are going to go gluten free anyway.

 

I meant my endoscopy results came back negative

And my IgG levels are not absolutely positive, it's borderline positive. 

From what I understand and have been reading a low IGA serum and a high IgG level is more indicative of celiac. But my IGA serum is not low either. 

[GFinDC]

Hi Shad,

We don't always get clear cut answers with celiac disease.  That's part of why celiac is so often mis-diagnosed as some other condition.  It can take years to get a celiac disease diagnosis.  Or sometimes it is very quick too.  But that is usually after years of a person having the condition and suffering from many symptoms.   Most people with celiac disease in the USA are not diagnosed today.

If you feel better not eating gluten there has to be a reason for that.  It could be celiac in the early stages, or it could be NCGS (non-celiac gluten sensitivity).  Either way the treatment is the same, avoid gluten in your diet.

I suggest you write down the symptoms you were having and how they made you feel.  Plus how things have improved sine going gluten-free.  Keep that as a reminder for later when you might begin to have doubts.  Sometimes it is helpful to do a food diary and record everything we eat and drink and the results.  Sometimes a pattern will emerge.

To start the gluten-free diet, please take a look at the newbie 101 thread in the coping with section.  It has some good tips.   Staying with whole foods (nuts. meats, veggies, fruits) and no dairy for a couple months is good.  No oats for a while either.

There are no tests for NCGS yet.  It may be related to FODMAPs in the diet though.

[shad]

16 minutes ago, GFinDC said:

Hi Shad,

We don't always get clear cut answers with celiac disease.  That's part of why celiac is so often mis-diagnosed as some other condition.  It can take years to get a celiac disease diagnosis.  Or sometimes it is very quick too.  But that is usually after years of a person having the condition and suffering from many symptoms.   Most people with celiac disease in the USA are not diagnosed today.

If you feel better not eating gluten there has to be a reason for that.  It could be celiac in the early stages, or it could be NCGS (non-celiac gluten sensitivity).  Either way the treatment is the same, avoid gluten in your diet.

I suggest you write down the symptoms you were having and how they made you feel.  Plus how things have improved sine going gluten-free.  Keep that as a reminder for later when you might begin to have doubts.  Sometimes it is helpful to do a food diary and record everything we eat and drink and the results.  Sometimes a pattern will emerge.

To start the gluten-free diet, please take a look at the newbie 101 thread in the coping with section.  It has some good tips.   Staying with whole foods (nuts. meats, veggies, fruits) and no dairy for a couple months is good.  No oats for a while either.

There are no tests for NCGS yet.  It may be related to FODMAPs in the diet though.

Appreciate your response. I understand it's a very misdiagnosed disease. I don't really think I feel any better being gluten free for almost 10 days now. And cutting off dairy doesn't feel great either, if anything I think the natural probiotics in some dairy might have been helping me. I do have a sensetive stomach tho , that's for sure and the GI gave me a FODMAP to try out. Is it possible that a specific food is causing my stomach to feel like this? Is there any good alergy test that can be performed for food intolerance? 

The main issue I have is upset stomach now and a super noisy and gasy stomach. Specifically when I eat the third meal of the day. Or if I eat at a buffet I always go to the bathroom right after which I think it shows I'm very sensetive to bacteria in the food.

My stomach sometimes heals and works well for months. but on the other hand I have softer stool or floating stool for months. I know fatty food does upset my stomach as well.

No matter what I will continue my gluten free diet for at least 6 months to see how that makes me feel.

Love this site. Lots of awsome members and info ?

[GFinDC]

Hi Shad,

There is a medical test for lactose intolerance.  Seems like there is one other food intolerance test but I forget what it is now.  But basically, the best test is our own bodies' response.  People do elimination diets to determine what foods cause them problems.  Myself I have done several elimination diets over the years, as food intolerances can change over time.  The first one I did I ate nothing but apples with salt on them for a few days.  I had not been eating salt for 5 years at that point.  I quickly learned I had an iodine deficiency because I got an energy boost after eating the apples with iodized salt.  That surprised me but it shouldn't have as not eating salt means you have to get your iodine elsewhere. Duh!

A good elimination diet is to pick out 5 simple foods that you think will not cause digestion problems.  Safe foods.  An example might be chicken, oranges, rice, broccoli and peas.  Eat only those foods for a week or two.  If you are not reacting to those foods then you should start to feel better.  It can be a little boring I know.  Anyhow, if everything is improved and your digestion has settled down, try adding one new food every 3 days.  If things haven't improved, one of the first 5 foods may be a problem.

Remember, everything counts, including spices, drinks, sauces, etc.  Our bodies don't discriminate when it comes to picking out a food to target.  So we can develop an intolerance to any food.  But anecdotally I'd say it is usually foods we eat a lot of that cause problems. 

[shad]

On 13/05/2018 at 11:20 AM, GFinDC said:

Hi Shad,

There is a medical test for lactose intolerance.  Seems like there is one other food intolerance test but I forget what it is now.  But basically, the best test is our own bodies' response.  People do elimination diets to determine what foods cause them problems.  Myself I have done several elimination diets over the years, as food intolerances can change over time.  The first one I did I ate nothing but apples with salt on them for a few days.  I had not been eating salt for 5 years at that point.  I quickly learned I had an iodine deficiency because I got an energy boost after eating the apples with iodized salt.  That surprised me but it shouldn't have as not eating salt means you have to get your iodine elsewhere. Duh!

A good elimination diet is to pick out 5 simple foods that you think will not cause digestion problems.  Safe foods.  An example might be chicken, oranges, rice, broccoli and peas.  Eat only those foods for a week or two.  If you are not reacting to those foods then you should start to feel better.  It can be a little boring I know.  Anyhow, if everything is improved and your digestion has settled down, try adding one new food every 3 days.  If things haven't improved, one of the first 5 foods may be a problem.

Remember, everything counts, including spices, drinks, sauces, etc.  Our bodies don't discriminate when it comes to picking out a food to target.  So we can develop an intolerance to any food.  But anecdotally I'd say it is usually foods we eat a lot of that cause problems. 

Thanks for the advice. Ill peform any test or diet that can pinpoint my stomach issue. I will run an alergy test ( I have never done one before) and I want to also try Open Original Shared Link. I'll also do a lactose intolerance test as you just suggested. 

I have been off of gluten and lactose for three weeks now and even tho my stomach rarely hurts , my stool still flows at times. But anytime I ate at home my stomach was never upset or in pain. The one thing that really made a difference was taking just one pill of probiotics 5 days ago almost instantly my stomach became quieter and the next day no floating stool ☺️

I spoke to a doctor online and she says she likes to put me back on gluten and test for gluten zoom (blood work). Has anyone heard of this test? 

 

My gastrointrogist said to try an FODMAP and see how that works.

It's just that I can not pinpoint it to anything, and specifically if ieat foods that are a mix of things my stomach usually hurts for example a buffet or eating a fish with lots of suaces on it. 

In the Mornings regardless of what I eat I'll be fine, lunch is usually fine as well, but third meal specially if a large meal will make my stomach noisy and gasy. Also an empty stomach is a very grumbling.

The same doctor who mentioned gluten zoom also said I should worry about parasites, this is something that I am probably prone to as I traveled a lot and pretty much are sushi eveywherr within the last 10 years. Not sure how to deal with this. I did a stool test and it came negative for parasites.

If anyone has any suggestions please share

 

[Nicholas W.]

I had gluten blood test - nothing here.
However, I am going to do the full food profile to find if I have an intolerance for some of the food.
Please keep updating with your progress. Trying to figure out the best way as I don't have insurance and want to optimize my expenses.

[shad]

1 hour ago, Nicholas W. said:

I had gluten blood test - nothing here.
However, I am going to do the full food profile to find if I have an intolerance for some of the food.
Please keep updating with your progress. Trying to figure out the best way as I don't have insurance and want to optimize my expenses.

May I ask what kind of gluten test you did? And did you find it helpful or accurate? 

And what kind of food intolerance test are you thinking of ?

 

As of right now I'm running out f ideas because I have cut so much food out of my diet where I'm loosing a couple lbs but my stomach still feels upset if I have a bigger meal in the evening. 

[Ennis-TX]

22 minutes ago, shad said:

but my stomach still feels upset if I have a bigger meal in the evening.

I have similar issues and have to eat blended, soft, easy to digest meals in the evening. Combination of not enough pancreatic enzymes to break down foods, and my stomach and gut having dumping issues in the evening. Helps to eat simple meals, soft meals, blended or cooked to swish able mush, like smoothies, and take digestive enzymes.

[shad]

2 hours ago, Ennis_TX said:

I have similar issues and have to eat blended, soft, easy to digest meals in the evening. Combination of not enough pancreatic enzymes to break down foods, and my stomach and gut having dumping issues in the evening. Helps to eat simple meals, soft meals, blended or cooked to swish able mush, like smoothies, and take digestive enzymes.

I took probiotics twice and almost instantly my stomach feels better. But I don't know if I want my  stomach to get used to probiotics on regular bases. What digestive enzymes do you take? 

[Ennis-TX]

1 hour ago, shad said:

I took probiotics twice and almost instantly my stomach feels better. But I don't know if I want my  stomach to get used to probiotics on regular bases. What digestive enzymes do you take? 

I was on jarrow which were porcine pancreatic enzymes, but it is was a bit incomplete and helped some. I am moving to SliverFern ones when they come in. They are supposed to be much stronger and work in various PHs levels. Down side to pancreatic enzymes like Jarrow is they require a very strong stomach acid to activate......I have noticed via testing my PH of my acid gets higher (weaker acid) as the day moves on so enzymes are less effective and I do not break down hard foods as easy.