GLUTEN FREE CHALLENGE FOR BIOPSY

[STE9900]

hi guys, 

i have recently (July) been diagnosed with celiac disease however via blood results my ttg iga was 128 which is ten times over normal and endomysial was a strong positive. I also had high lymphocytes and low vitamin B12. My GP advised due to how high to start a gluten free diet immediately which i did, my bloating, brain fog, bowels etc got how they should be and anxiety also. The Gastro dept have contacted me asking for me to go onto a gluten diet for 8 weeks for a biopsy which i have been glutened and has caused me utter hell in past. My concern is why on celiac foundation website are we told if it is ten times over normal count that pt should not necessarily need an Endoscopy. I have had a MRI due to brain fog, and they had found white matter on my brain that is linked to celiac.

 

 

PLEASE HELP I HAVE NO IDEA WHAT TO DO, HE JUST TOLD ME TO GO ON GLUTEN DIET NO ADVISORIES NOTHING, EVEN WHEN I AM A STRONG POSITIVE!!!! and i really do not know if it is worth the trauma. 

[trents]

Welcome to the forum STE9900!

What country are you in? I understand that in the UK, if you have an official diagnosis of celiac disease there are government supplied stipends for gluten free food and also celiac follow-up care. If where you live there are similar tangible benefits if you have an official diagnosis and if the official diagnosis depends on confirmation of celiac disease via biopsy, then there maybe reason to endure the 8 week gluten challenge. If a biopsy is not required for an official diagnosis and/or there is no tangible benefit to having an official diagnosis then I would decline the endoscopy/biopsy. And from your first post, it sounds like you have an official diagnosis already. Do not feel like you have to oblige the GI doc. It's your health and your body.

[STE9900]

i am in the UK, i just thought with how high they are i should ot need this. it a shame

[trents]

It is true that in the UK if the antibody test numbers are 10x normal or greater then physicians can declare an official diagnosis without a biopsy. What I'm not sure of is if this is yet a universal practice in the UK. Have you communicated with your primary care physician about doing this?

[cristiana]

@STE9900 - Hi!

How frustrating, I am so sorry you are going through all of this.  

This sort of thing is so difficult, often views differ between specialists on all sorts of things.  I'm going through this with a different health issue at the moment here in the UK and I keep being told different things by different experts.  If you have the funds, could you try going private for a second opinion?  It is possible you might even be able to get one through the NHS.

Also,  I wonder would it be worth contacting the Coeliac UK healthline?  I'd give them a call to see if they can put you onto anyone who might be able to help.

https://www.coeliac.org.uk/glossary/helpline/#:~:text=Our Helpline is staffed by,to 4pm Monday to Friday.

Edited October 25, 2023 by cristiana

[Scott Adams]

Let me ask you this...let's just say that you did a gluten challenge for 6-8 weeks, got a biopsy, and it was negative...would you start eating gluten again? From your description I doubt it. I would just tell them that you're satisfied with the diagnosis, you've gone gluten-free and are feeling much better--which itself is confirmation that you have non-gluten gluten sensitivity at the least, but celiac disease is far more likely given your high test results. 

I'm not a doctor, but believe the best way for your to confirm you diagnosis at this point is to have another antibody test done every 3-6 months, and watch the levels drop.

[STE9900]

35 minutes ago, Scott Adams said:

Let me ask you this...let's just say that you did a gluten challenge for 6-8 weeks, got a biopsy, and it was negative...would you start eating gluten again? From your description I doubt it. I would just tell them that your satisfied with the diagnosis, you've gone gluten-free and are feeling much better--which itself is confirmation that you have non-gluten gluten sensitivity at the least, but celiac disease is far more likely given your high test results. 

I'm not a doctor, but believe the best way for your to confirm you diagnosis at this point is to have another antibody test done every 3-6 months, and watch the levels drop.

Thank you so much I think I’m going to ask for a blood test tomorrow as I’m only 21 and I’ve changed jobs and was off sick and left university from how fatigue I was but told for years I had IBS.

[trents]

21 minutes ago, STE9900 said:

Thank you so much I think I’m going to ask for a blood test tomorrow as I’m only 21 and I’ve changed jobs and was off sick and left university from how fatigue I was but told for years I had IBS.

How long have you been on a gluten free diet? Studies show that many people who believe they have been eating gluten free are actually practicing lower gluten consumption but not gluten free. This is particularly true of those still eating out. It takes time and education to get a good grasp of the many places and ways (think, "terminololgy") gluten is found in the food supply and then there is "CC" (cross contamination). This might be helpful: 

 

[STE9900]

29 minutes ago, trents said:

How long have you been on a gluten free diet? Studies show that many people who believe they have been eating gluten free are actually practicing lower gluten consumption but not gluten free. This is particularly true of those still eating out. It takes time and education to get a good grasp of the many places and ways (think, "terminololgy") gluten is found in the food supply and then there is "CC" (cross contamination). This might be helpful: 

 

Hi thank you for this information I’ve been gluten-free since July now, it took till about august for me to understand the diet and cut from scratch I haven’t even seen a dietician yet. But im a different person energy wise and when im glutened im back to anxious me, fatigued me. Im learning more and more and Ik the uk they can classify if below  20 something as gluten-free 

[trents]

1 minute ago, STE9900 said:

Hi thank you for this information I’ve been gluten-free since July now, it took till about august for me to understand the diet and cut from scratch I haven’t even seen a dietician yet. But im a different person energy wise and when im glutened im back to anxious me, fatigued me. Im learning more and more and Ik the uk they can classify if below  20 something as gluten-free 

20 parts per million ("ppm"). Same as in the U.S. and I think that is pretty much the standard everywhere to qualify for advertising something as gluten free. But, some celiacs are very sensitive and the 20ppm standard is inadequate to keep them from having a reaction. There are a couple of internationally recognized certification groups that use higher standards such as 10 ppm or 5 ppm. If you see "Certified Gluten Free" on the label it has passed testing for these stricter standards. There is also the issue of cross reactivity where a celiac reacts to some other food or foods that do not contain gluten but have proteins whose structures closely resemble gluten. Common among them are oats, dairy and eggs. But it can be a host of other things. "Meat glute" (transglutaminase) is another. So, watch out for CR as well as it is very common in the celiac population. If you don't improve significantly by avoiding wheat/barley/rye in food, then look for CR. Keeping a food diary can really help in this regard.

Also, are you addressing the vitamin and mineral deficiencies that typically develop from long term, undiagnosed celiac disease or from failing to adhere to a gluten-free diet after diagnosis? Damage to the small bowel villous lining greatly reduces the nutrient absorbing efficiency of that organ and typically results in nutritional deficiencies that should be addressed with some quality, gluten free vitamin and mineral supplements. Recovery can be significantly speeded up by giving attention to this.

[Scott Adams]

58 minutes ago, STE9900 said:

Hi thank you for this information I’ve been gluten-free since July now, it took till about august for me to understand the diet and cut from scratch I haven’t even seen a dietician yet. But im a different person energy wise and when im glutened im back to anxious me, fatigued me. Im learning more and more and Ik the uk they can classify if below  20 something as gluten-free 

In general if you see "gluten-free" on a label in the USA, Canada, Europe, Australia, etc., it does mean that the food is safe for those with celiac disease, and it does NOT mean that there is 19ppm gluten in it, as some people might lead you to believe.

Whenever a company detects gluten in the 5-19ppm (most tests can't accurately go below 5ppm) in foods which they have labelled gluten-free, especially a USA-based company (lawsuits in the USA are far more common and easier to win in such cases), they will immediately seek to find and eliminate the source of the gluten contamination.

There is a very common myth or misconception that companies don't care at all if their products test between 5-19ppm, but they definitely do because a product recall could be just around the corner should they hit the 20ppm or higher level. Many people, including myself, now have home test kits like Nima, and companies are definitely aware of this.

 

[STE9900]

Thank you, that makes more sense now, I heard about it on a podcast it hard to know what Myth vs fact. 
 

[RMJ]

5 hours ago, STE9900 said:

Hi thank you for this information I’ve been gluten-free since July now, it took till about august for me to understand the diet and cut from scratch I haven’t even seen a dietician yet. But im a different person energy wise and when im glutened im back to anxious me, fatigued me. Im learning more and more and Ik the uk they can classify if below  20 something as gluten-free 

I would probably wait until you’ve been six months gluten free to retest antibodies.  They stay around for a while.

[NanCel]

On 10/25/2023 at 1:40 PM, STE9900 said:

hi guys, 

i have recently (July) been diagnosed with celiac disease however via blood results my ttg iga was 128 which is ten times over normal and endomysial was a strong positive. I also had high lymphocytes and low vitamin B12. My GP advised due to how high to start a gluten free diet immediately which i did, my bloating, brain fog, bowels etc got how they should be and anxiety also. The Gastro dept have contacted me asking for me to go onto a gluten diet for 8 weeks for a biopsy which i have been glutened and has caused me utter hell in past. My concern is why on celiac foundation website are we told if it is ten times over normal count that pt should not necessarily need an Endoscopy. I have had a MRI due to brain fog, and they had found white matter on my brain that is linked to celiac.

 

 

PLEASE HELP I HAVE NO IDEA WHAT TO DO, HE JUST TOLD ME TO GO ON GLUTEN DIET NO ADVISORIES NOTHING, EVEN WHEN I AM A STRONG POSITIVE!!!! and i really do not know if it is worth the trauma. 

I cannot believe they ask us to do a gluten challenge knowing what pain it causes.  I could not tolerate the gluten challenge.  Having two genes linked to celiac, a positive blood test and good results from gluten free diet is good for me--Seriously, a gluten challenge is damaging and causes further anxiety.  I would like to put in the suggestion box that having genes, a positive celiac panel and good response to gluten free is enough criteria without being invasive and requesting a patient be in pain.  Perhaps the medical community will understand that those unable to tolerate the gluten might not be capable of the challenge.  Best of luck to you.

[Sobiha]

On 10/25/2023 at 6:40 PM, STE9900 said:

hi guys, 

i have recently (July) been diagnosed with celiac disease however via blood results my ttg iga was 128 which is ten times over normal and endomysial was a strong positive. I also had high lymphocytes and low vitamin B12. My GP advised due to how high to start a gluten free diet immediately which i did, my bloating, brain fog, bowels etc got how they should be and anxiety also. The Gastro dept have contacted me asking for me to go onto a gluten diet for 8 weeks for a biopsy which i have been glutened and has caused me utter hell in past. My concern is why on celiac foundation website are we told if it is ten times over normal count that pt should not necessarily need an Endoscopy. I have had a MRI due to brain fog, and they had found white matter on my brain that is linked to celiac.

 

 

PLEASE HELP I HAVE NO IDEA WHAT TO DO, HE JUST TOLD ME TO GO ON GLUTEN DIET NO ADVISORIES NOTHING, EVEN WHEN I AM A STRONG POSITIVE!!!! and i really do not know if it is worth the trauma. 

I have been waiting 9 months to see a gastroenterologist at the local hospital. I'm  self diagnosed and thanks to Dr google, a good nutritionist and the support of this group I am feeling so much better now. I believe I have has this disease for many years and it has been misdiagnosed. When I do eventually get an appointment I will not do the gluten challenge.  I was so ill before I went gluten free eight months ago that  I would never deliberately go back to being like that again. After all, the only treatment for celiac disease is to be gluten free. I can't see any real advantage to an official diagnosis but that is just my opinion. 

[STE9900]

1 hour ago, Sobiha said:

I have been waiting 9 months to see a gastroenterologist at the local hospital. I'm  self diagnosed and thanks to Dr google, a good nutritionist and the support of this group I am feeling so much better now. I believe I have has this disease for many years and it has been misdiagnosed. When I do eventually get an appointment I will not do the gluten challenge.  I was so ill before I went gluten free eight months ago that  I would never deliberately go back to being like that again. After all, the only treatment for celiac disease is to be gluten free. I can't see any real advantage to an official diagnosis but that is just my opinion. 

Have you had a blood test to confirm a diagnosis ? It could be a non celiac gluten sensitivity you see ?

 

because mine is high the reason I’m contemplating it xx 

[Sobiha]

2 hours ago, STE9900 said:

Have you had a blood test to confirm a diagnosis ? It could be a non celiac gluten sensitivity you see ?

 

because mine is high the reason I’m contemplating it xx 

No, I haven't had a blood test for celiac disease. I'm sure that's what I have though. I've suffered from anaemia for years. As far back as 2016 I was in hospital with unexplained iron deficiency and had two blood transfusions. Since going gluten free I no longer have constipation or bouts of diarrhoea. The stomach cramps and sickness has stopped.  My joints are so much better too, and I've gained weight. If I'm accidently exposed to gluten I have a really severe reaction..sometimes soon after exposure but sometimes the next day. I think that depends on how much I've ingested. xx

[Scott Adams]

6 hours ago, NanCel said:

I cannot believe they ask us to do a gluten challenge knowing what pain it causes.  I could not tolerate the gluten challenge.  Having two genes linked to celiac, a positive blood test and good results from gluten free diet is good for me--Seriously, a gluten challenge is damaging and causes further anxiety.  I would like to put in the suggestion box that having genes, a positive celiac panel and good response to gluten free is enough criteria without being invasive and requesting a patient be in pain.  Perhaps the medical community will understand that those unable to tolerate the gluten might not be capable of the challenge.  Best of luck to you.

For those with symptoms I agree with you, but many people don't have symptoms, or have few, seemingly unrelated symptoms. For those with symptoms I wish the protocol were a positive blood test followed by a gluten-free diet--if the symptoms go away make the diagnosis, possibly after a genetic test.

[NanCel]

18 hours ago, Scott Adams said:

protocol were a positive blood test

I totally agree with you!