Celiac newbie

[Matt8949]

Good evening,

I’ve just been diagnosed with celiac last week at 35 years of age. Quite surprised I have not known before but it makes sense looking back at symptoms. I generally don’t eat pasta/pizza but it’s the enjoyable bits like beer/cake/biscuits that’s hard to manage. 
I’m seeing a lot of ‘may contain’ and ‘made in a factory where wheat and gluten is handled’ etc and I’m wondering how safe do people play this and how people find package reading with new understanding developing all the time. 
 

Matt 

[RMJ]

Welcome!

People with celiac disease differ greatly in their sensitivity to gluten contamination. I’m super sensitive. I couldn’t get my antibody levels down to the  normal range until almost all gluten free processed foods I ate were certified gluten free. I definitely avoid ”may contain” and am wary of “made in a factory…”.  That last statement isn’t required by law in the US so I may be getting foods made in factories that handle wheat without knowing it. I try not to eat too many processed foods.

Many people aren’t nearly as sensitive.  You may just have to see what works for you.

[trents]

RMJ pretty much says what there is to say on the subject. It mostly boils down to your level of gluten sensitivity but there are other factors as well. In a production environment that is not dedicated gluten free the level of cross contamination may vary from batch to batch and from run to run. When the goal of production is not to arrive at a gluten free product then there are many variables. How well do they clean the machinery after running a wheat-based product? What is the level of cross contamination of the raw ingredients they are receiving from suppliers?

Another factor is that many celiacs are "silent". That is they do not experience discernable reactions to gluten consumption even though it is doing damage to their small bowel mucosa over time.

So, there is just no way to answer your question in a black and white fashion.

[cristiana]

Hi Matt

I am based in the UK and find that that foods with the 'may contain' label more often than not DO contain gluten and I end up with symptoms.  Here in the UK labelling has become incredibly strict, but that has to be a good thing.   

I think in time I am sure you will find gluten-free products you like that you will enjoy, it just takes a bit of time.  I miss McVities Penguins terribly but have recently found some fantastic chocolate biscuits in Tescos which, dare I say it, are probably even better than Penguins!

Cristiana

 

 

[Wheatwacked]

Hello Matt,

     You don't say how you were diagnosed, but I assume at your age it was verified by damage to your small intestine found by endoscopic visualization or biopsy.

     That needs to heal.  Afterwards, you can experiment with ‘may contain’ and ‘made in a factory' foods.  

[Sabrine]

Finding this interesting but I’m confused. Just been told my celiac diagnosis today. No idea how long I’ve had it but I do suffer from constipation and I’ve lost a lot of weight in the last few weeks but fortunately no other symptoms. this is going to sound like an ignorant question but do I have to go completely gluten-free immediately or can I do it gradually. Will taking out most of the obvious things like pasta in my diet do any good or do I have to eliminate all gluten to do any good?

[RMJ]

1 hour ago, Sabrine said:

Finding this interesting but I’m confused. Just been told my celiac diagnosis today. No idea how long I’ve had it but I do suffer from constipation and I’ve lost a lot of weight in the last few weeks but fortunately no other symptoms. this is going to sound like an ignorant question but do I have to go completely gluten-free immediately or can I do it gradually. Will taking out most of the obvious things like pasta in my diet do any good or do I have to eliminate all gluten to do any good?

You need to go completely gluten free in order to heal your intestines.

[trents]

Ditto with what RMJ said. 

[Matt8949]

8 hours ago, Wheatwacked said:

Hello Matt,

     You don't say how you were diagnosed, but I assume at your age it was verified by damage to your small intestine found by endoscopic visualization or biopsy.

     That needs to heal.  Afterwards, you can experiment with ‘may contain’ and ‘made in a factory' foods.  

I was diagnosed via two blood tests, I have an endoscopy in about 10 days which I am assuming will confirm (or tell me that the Dr gave a misdiagnosis which I hope but is very unlikely). 
 

Thank you all for your answers, I have immediately adopted a gluten free diet, and am very cautious. Hopefully it’s something that I developed recently and the damage to my innards isn’t too bad. 

[Sabrine]

I am hoping for exactly the same as you Matt. Does the endoscopy give any indication of how bad damage is that has been done? I wish I hadn’t ignored the constipation for the two years but I really thought it was caused by other medication I was on. From what I am reading, I am hoping that damage done can be repaired or am I being too optimistic?

 

 

[Matt8949]

41 minutes ago, Sabrine said:

I am hoping for exactly the same as you Matt. Does the endoscopy give any indication of how bad damage is that has been done? I wish I hadn’t ignored the constipation for the two years but I really thought it was caused by other medication I was on. From what I am reading, I am hoping that damage done can be repaired or am I being too optimistic?

 

 

From what I have read the endoscopy will give the clinicians a good level of understanding around the damage if there is any, this will need to heal and there would be a healing process over time where the body would naturally repair as it would a wound, but of course depends on the extent of the damage. 
You can only work with what you know, so many things cause similar symptoms so it’s hard to get on top of early I guess. 

[RMJ]

4 hours ago, Matt8949 said:

I was diagnosed via two blood tests, I have an endoscopy in about 10 days which I am assuming will confirm (or tell me that the Dr gave a misdiagnosis which I hope but is very unlikely). 
 

Thank you all for your answers, I have immediately adopted a gluten free diet, and am very cautious. Hopefully it’s something that I developed recently and the damage to my innards isn’t too bad. 

For an accurate diagnosis you should continue to eat gluten until you have the endoscopy. How long have you been gluten free?

[Matt8949]

10 minutes ago, RMJ said:

For an accurate diagnosis you should continue to eat gluten until you have the endoscopy. How long have you been gluten free?

I have avoided gluten since last Monday so a week and a half, another 10 days until my endoscopy so it would be around three weeks if I continue to avoid. 

[trents]

Matt, ditto to what RMJ said about continuing to consume gluten until the endoscopy/biopsy is done. Many have made the mistake of not knowing to do that and there was enough healing of the villous lining of the small bowel to provide results that were not clear. They you are in the dilemma of conflicting test results. Having said that, there are some cases where the individual's health is so fragile that continuing to consume gluten in order to ensure a valid biopsy result is contraindicated. 

Edited July 18, 2024 by trents

[Matt8949]

24 minutes ago, trents said:

Matt, ditto to what RMJ said about continuing to consume gluten until the endoscopy/biopsy is done. Many have made the mistake of not knowing to do that and there was enough healing of the villous lining of the small bowel to provide results that were not clear. They you are in the dilemma of conflicting test results. Having said that, there are some cases where the individual's health is so fragile that continuing to consume gluten in order to ensure a valid biopsy result is contraindicated. 

Thank you both, that makes sense. I will treat myself over the week and will limit it so that I can give myself the best chance of a conclusive result but not overboard. 

[trents]

Matt, recent guidelines for the "gluten challenge" are 10g of gluten (the equivalent of 4-6 slices of bread) daily for at least 2 weeks. And this would apply to either the antibody blood testing or the endoscopy/biopsy. The term "gluten challenge" refers to those who have been gluten free for a significant period of time but then wish to get tested for confirmation of celiac disease and so need to return to gluten consumption for testing purposes. So, my point is that it may not be appropriate to "limit" your gluten consumption as you go back on it leading up to the endoscopy/biopsy.

Edited July 18, 2024 by trents

[Wheatwacked]

Agreement with trents and RMJ.  In fact you should go hog wild on gluten until the endoscopy.  The more damage the more likely they'll find it.

It does'nt matter positive blood or endoscopy.  Either one positive is not a misdiagnosis.  Some people with Dermetitis Herpetiformis, the dermatologic celiac disease, test negative for both blood and endoscopy.  The hard part is overcoming denial, both personal and from medical staff.  You are making a good start.