Help with celiac test

Sad21+

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Messages
161
Hello I need alot of help. I'm getting a test to see if I have celiac. I have IBS I've stopped eating gluten for 8-9 years. But I must eat gluten I'm afraid.



I'm prediabetic and I'm worried about the blood spikes plus the pain if eating gluten.



Any advice would be great. I'm supposed to start eating gluten today. The doctor said I need to eat gluten for a week to show something on the tests. But I'm afraid. Any help would be great. Thank you.
 

Rokaab

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2,193
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Type 1
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Pump
You will just have to bite the bullet I'm afraid, if you are coeliac and if you dont eat any gluten then the test wont show anything

If may well spike your blood sugar or may cause pain for your IBS :( but if you want the tests done and it to be accurate you need to eat gluten, at least you know its only for a week (cant remember how long they told me when they tested me - but that was back in 2005)
 

AndBreathe

Master
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11,442
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I reversed my Type 2
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Diet only
Hello I need alot of help. I'm getting a test to see if I have celiac. I have IBS I've stopped eating gluten for 8-9 years. But I must eat gluten I'm afraid.



I'm prediabetic and I'm worried about the blood spikes plus the pain if eating gluten.



Any advice would be great. I'm supposed to start eating gluten today. The doctor said I need to eat gluten for a week to show something on the tests. But I'm afraid. Any help would be great. Thank you.
I have been tested for coeliac several times now. This testing had mainly been done by the Endo I see for my wonky thyroid.

When it first came up, I raised the challenges of already being long term grain free (not consciously GF), and the need to consume gluten before the test. My Endo's take on it was that I shouldn't change my diet prior to the test, even though he acknowledges it probably would not return a positive result. His rationale was it would be living (for me) and unnatural life.

My results thus far (I reckon I have had 5 or 6 panels now) have been inconclusive. The Endo's recommendation was that I adopt a totally GF lifestyle immediately and accept it as lifelong.

A coeliac antibodies panel is like many other autoimmune conditions; the absence of antibodies does not rule out the condition (in this instance coeliac). Antibodies over a certain level definitely rule it in.

The Coeliac Society guidance is this:

"....
If you've already reduced or eliminated gluten from your diet, you will need to reintroduce it to make sure you get the most accurate test results. While it may be difficult and uncomfortable, it’s essential for your long term health.

As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing.

For children, you can mix wheat flour into foods such as yogurt or baked beans to add more gluten into their diet.

If you are reintroducing gluten into your diet, you should discuss how best to manage your symptoms with your GP. Your GP will be able to arrange for you to be tested for coeliac disease as soon as it is appropriate....
."

Good luck with it, however you approach it.
 

Melgar

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Other
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You could get genetically tested to see if you have the genetic variants DQ2 and DQ8. if you don’t have those variants then it is unlikely you have coeliac . you could be non coeliac gluten intolerant , which has the same symptoms as coeliac , but without the immune response . If you have either or both DQ2/DQ8 then, as others have said, you will have to stomach the gluten challenge and test for antibodies. It matters not if you have coeliac or non coeliac gluten intolerance , it means no gluten.

My daughter attempted the gluten challenge, but she threw up instantly. The tiny amount that she ingested from the 30 seconds she kept it down activated an immune response testing positive for antibodies. The confirmed coeliac.

I have both genetic variants, before ceasing all gluten, Previously I suffered with duodenal ulcers over a number of years. I was hospitalized. They tested me three times for h pylori over several years and every time negative.
Im guessing as with you , you had a range of symptoms : IBS, bloating, vomiting, diarrhea , mouth ulcers . And later I had 2 skin disorders , dermatitis herpetiformis and gluten triggered urticaria. All those have pretty much disappeared when I ceased gluten.
 
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silky1

Well-Known Member
Messages
48
Type of diabetes
Type 2
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Tablets (oral)
Hello I need alot of help. I'm getting a test to see if I have celiac. I have IBS I've stopped eating gluten for 8-9 years. But I must eat gluten I'm afraid.



I'm prediabetic and I'm worried about the blood spikes plus the pain if eating gluten.



Any advice would be great. I'm supposed to start eating gluten today. The doctor said I need to eat gluten for a week to show something on the tests. But I'm afraid. Any help would be great. Thank you.
Only you can really make that decision - I'd only been off it for about 9 months and they wanted me to do the so called "Gluten Challenge" - for the sake of a formal diagnosis - to me it wasn't worth the effort - that was about 15 years ago now and without queston, I made the right choice

Sorry - not very helpful really - but I'd imagine you could have quite a poor response given you've been Gluten free for near enough a decade

ETA to add - if you consider what you are eating - then I don't see why blood spikes should come into it - if you research gluten free foods, you will see that generally they contain more sugar and fat to get a similar effect when compared to gluten based foods.
 
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silky1

Well-Known Member
Messages
48
Type of diabetes
Type 2
Treatment type
Tablets (oral)
You could get genetically tested to see if you have the genetic variants DQ2 and DQ8. if you don’t have those variants then it is unlikely you have coeliac . you could be non coeliac gluten intolerant , which has the same symptoms as coeliac , but without the immune response . If you have either or both DQ2/DQ8 then, as others have said, you will have to stomach the gluten challenge and test for antibodies. It matters not if you have coeliac or non coeliac gluten intolerance , it means no gluten.

My daughter attempted the gluten challenge, but she threw up instantly. The tiny amount that she ingested from the 30 seconds she kept it down activated an immune response testing positive for antibodies. The confirmed coeliac.

I have both genetic variants, before ceasing all gluten, Previously I suffered with duodenal ulcers over a number of years. I was hospitalized. They tested me three times for h pylori over several years and every time negative.
Im guessing as with you , you had a range of symptoms : IBS, bloating, vomiting, diarrhea , mouth ulcers . And later I had 2 skin disorders , dermatitis herpetiformis and gluten triggered urticaria. All those have pretty much disappeared when I ceased gluten.
My dermatologist (and others before him) are adamant that clearing around 90% of my eczema through switching to a gluten free diet is not related to my eczema in any way. It was a very much welcomed "side effect"

I was incredibly ill when I eventually changed - I'd lost three stone in three months - I couldn't eat anything and was told I had Collagenous Colitis - I had a second attack a year or so later and lost another three stone (at that stage I was up and down still finding hidden gluten everywhere)
I couldn't leave the house - if I did - even a sip of water to help my dry mouth would see me stuck in the bathroom - horrible.
 
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Melgar

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I have been tested for coeliac several times now. This testing had mainly been done by the Endo I see for my wonky thyroid.

When it first came up, I raised the challenges of already being long term grain free (not consciously GF), and the need to consume gluten before the test. My Endo's take on it was that I shouldn't change my diet prior to the test, even though he acknowledges it probably would not return a positive result. His rationale was it would be living (for me) and unnatural life.

My results thus far (I reckon I have had 5 or 6 panels now) have been inconclusive. The Endo's recommendation was that I adopt a totally GF lifestyle immediately and accept it as lifelong.

A coeliac antibodies panel is like many other autoimmune conditions; the absence of antibodies does not rule out the condition (in this instance coeliac). Antibodies over a certain level definitely rule it in.

The Coeliac Society guidance is this:

"....
If you've already reduced or eliminated gluten from your diet, you will need to reintroduce it to make sure you get the most accurate test results. While it may be difficult and uncomfortable, it’s essential for your long term health.

As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing.

For children, you can mix wheat flour into foods such as yogurt or baked beans to add more gluten into their diet.

If you are reintroducing gluten into your diet, you should discuss how best to manage your symptoms with your GP. Your GP will be able to arrange for you to be tested for coeliac disease as soon as it is appropriate....
."

Good luck with it, however you approach it.
When my daughter was little, her play dates were fraught. Moms would roll out the pizza snacks and our daughter would come home vomiting and crying. It took 10 years to get that official coeliac diagnosis for her. The tiniest amount of gluten would bring it all on. She doesn't get the skin rashes like I do. I do think it's very important for children to get tested because of the damage it causes along with your body's inability to absorb vitamins and nutrients. I was a painfully thin child, but no symptoms. I do have symptoms now and I also had issues earlier like all the stomach ulcers I was getting from my late 30's, my inability to eat any breads. I was also very thin due to the fact that I was not getting the most from my food. I weighed just 100lbs and I was just a tad under 5'7" at the time. I tested positive for the gene variants associated with Coeliac , DQ2 & DQ8. That was enough for me and my Dr agreed. I also have the immune response to gluten errupting on my skin. All my symptoms went as soon as I stopped eating gluten. If I accidentally eat a tiny bit of gluten the rashes come back along with the rest of it. We have a gluten free household.
 
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Melgar

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My dermatologist (and others before him) are adamant that clearing around 90% of my eczema through switching to a gluten free diet is not related to my eczema in any way. It was a very much welcomed "side effect"

I was incredibly ill when I eventually changed - I'd lost three stone in three months - I couldn't eat anything and was told I had Collagenous Colitis - I had a second attack a year or so later and lost another three stone (at that stage I was up and down still finding hidden gluten everywhere)
I couldn't leave the house - if I did - even a sip of water to help my dry mouth would see me stuck in the bathroom - horrible.
That's interesting. There are a number skin conditions related to an immune response to gluten. I have two of them. Coeliac can cause no end of bodily issues, not all of them are associated with your small intestines which, of course, is the primary place it does the most damage. I also get a dry mouth, but not sure if that is associated with Coeliac or due to my meds.

Gluten is everywhere! As you know it is found in the most unlikely of foods and food additives. That is why I cook from scratch. I have recently returned from a trip to the UK, wow the UK has alot more gluten free products than Canada. Most gluten free products in supermarkets here are found in the 'pharmacy' section and very expensive. UK food prices (including gluten free products) in general are much cheaper than they are in Canada. Canada is very expensive.

I have a couple of apps on my phone I find useful - 'Gluten Free' and 'open Food Facts.
 
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Melgar

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I also find that Coeliac makes ones blood sugars unstable. I find unstable blood sugars associated with Coeliac is a common issue.
 
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Sad21+

Well-Known Member
Messages
161
You will just have to bite the bullet I'm afraid, if you are coeliac and if you dont eat any gluten then the test wont show anything

If may well spike your blood sugar or may cause pain for your IBS :( but if you want the tests done and it to be accurate you need to eat gluten, at least you know its only for a week (cant remember how long they told me when they tested me - but that was back in 2005)
sorry i do apologise for the extremely long reply. yes you are right i tried for 2 days it made me so sick. i checked it has to be 6 weeks and roughly 3 slicies of bread to show up on the tests. Do you have coeliac disease ?
 

Sad21+

Well-Known Member
Messages
161
I have been tested for coeliac several times now. This testing had mainly been done by the Endo I see for my wonky thyroid.

When it first came up, I raised the challenges of already being long term grain free (not consciously GF), and the need to consume gluten before the test. My Endo's take on it was that I shouldn't change my diet prior to the test, even though he acknowledges it probably would not return a positive result. His rationale was it would be living (for me) and unnatural life.

My results thus far (I reckon I have had 5 or 6 panels now) have been inconclusive. The Endo's recommendation was that I adopt a totally GF lifestyle immediately and accept it as lifelong.

A coeliac antibodies panel is like many other autoimmune conditions; the absence of antibodies does not rule out the condition (in this instance coeliac). Antibodies over a certain level definitely rule it in.

The Coeliac Society guidance is this:

"....
If you've already reduced or eliminated gluten from your diet, you will need to reintroduce it to make sure you get the most accurate test results. While it may be difficult and uncomfortable, it’s essential for your long term health.

As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing.

For children, you can mix wheat flour into foods such as yogurt or baked beans to add more gluten into their diet.

If you are reintroducing gluten into your diet, you should discuss how best to manage your symptoms with your GP. Your GP will be able to arrange for you to be tested for coeliac disease as soon as it is appropriate....
."

Good luck with it, however you approach it.
Thank you for taking the time to reply i do apologise for the ridicolous delay to respond. yes you are right 6 weeks for anything to show up. yes i'm planning to speak to my gp i tried reintroducing it i'm in so much pain i chickened out. i do not think i can do the test. thank you for your advice and kindness.
 

Sad21+

Well-Known Member
Messages
161
You could get genetically tested to see if you have the genetic variants DQ2 and DQ8. if you don’t have those variants then it is unlikely you have coeliac . you could be non coeliac gluten intolerant , which has the same symptoms as coeliac , but without the immune response . If you have either or both DQ2/DQ8 then, as others have said, you will have to stomach the gluten challenge and test for antibodies. It matters not if you have coeliac or non coeliac gluten intolerance , it means no gluten.

My daughter attempted the gluten challenge, but she threw up instantly. The tiny amount that she ingested from the 30 seconds she kept it down activated an immune response testing positive for antibodies. The confirmed coeliac.

I have both genetic variants, before ceasing all gluten, Previously I suffered with duodenal ulcers over a number of years. I was hospitalized. They tested me three times for h pylori over several years and every time negative.
Im guessing as with you , you had a range of symptoms : IBS, bloating, vomiting, diarrhea , mouth ulcers . And later I had 2 skin disorders , dermatitis herpetiformis and gluten triggered urticaria. All those have pretty much disappeared when I ceased gluten.
Thank you for taking the time to comment this. Sorry for the long delay to reply. I 'm really sorry to hear of you and your daughter and i hope you both are doing better ? OMG i have the same symptons unfortuately they all came back when i attempted to reintroduce gluten back to my diet. i'm so sore, swollen bloated and the pain is awful. My excema is awful right now as well .i will ask my doctor about the genetic variants. i cannot do the challenge it's too much.I think from reading everyones comments i will speak to my gp and come with a plan. Because i couldn't even do 2 days let alone 6 weeks. thank you for your advice and sharing your experinece. it's much appreciated
 

Sad21+

Well-Known Member
Messages
161
Only you can really make that decision - I'd only been off it for about 9 months and they wanted me to do the so called "Gluten Challenge" - for the sake of a formal diagnosis - to me it wasn't worth the effort - that was about 15 years ago now and without queston, I made the right choice

Sorry - not very helpful really - but I'd imagine you could have quite a poor response given you've been Gluten free for near enough a decade

ETA to add - if you consider what you are eating - then I don't see why blood spikes should come into it - if you research gluten free foods, you will see that generally they contain more sugar and fat to get a similar effect when compared to gluten based foods.
i do apologise for the late reply, actually your comment has been very helpful. I'm stopping it the challenge i can't force myself anymore i'm too sick. And the gluten free foods having more sugar is absolutely right i was eating alot of gluten free food and that really pushed me into prediabetic as well as other things. i will keep your advice in mind about not worrying so much regarding blood spikes and gluten. but i completely understand i really don't think the gluten challenge is worth it i actually regret it.
 

Melgar

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@Sad21+ I sure can. As you know our small intestines get damaged due to the immune response to gluten. It creates nutrient absorption issues for us amongst other things. I have been told by my Drs that having Coeliac May be contributing to my unstable blood sugars. In point of fact when you google unstable blood sugars, in particular ‘brittle diabetes’ up pops Coeliac disease. I swing between low, normal and high blood sugars with no discernible pattern. It makes managing my sugars problematic. I can eat 4 x 50p size crackers and my blood sugars will shoot up to 14 mmol/ls, settle at 10 and stay there for hours. I can eat the same number of crackers the following day and my blood sugars may go to 8 mmol/ls and come down to 6 within that golden 2 hr window. Furthermore my morning fasting blood sugars can be at 4mmol/ls one morning then 10 the next. And I suffer, from time to time, with hypos around the mid to high 2’s, It does my head in. I don’t know what type you are living with, but there is a genetic link between Coeliac and Type 1 diabetes. I have even seen Gluten cited as a possible trigger for juvenile T1 diabetes. There is however no link between Type 2 and Coeliac, I guess it’s just bad luck one has that gene variant.

If you are like me, no matter how careful I am with my strict gluten free diet, at some point I will gluten myself. And then it starts, the IBS that causes you to roll around the bed in pain, drenched through with sweat, then running to the toilet, praying you don’t pass out. The bloating, the vomiting blah blah . And me, I get the gluten rashes. The first to appear are the welts, all over my body. So it’s not surprising one’s blood sugars are all over the place.