Becoming extremely gluten sensitive after going gluten free?

[Bbbhfd]

Hey guys! I’m new to the gluten free community, only discovered two months ago that I’ve been gluten intolerant for the past few years. Ever since I went gluten free, I’ve been extremely extremely sensitive to gluten - where so much as eating something with small amounts of gluten, or even some things that are typically gluten free but may have cross contamination, will cause a strong reaction in my body and I’ll have flu like symptoms for the next 3 days.

 

It’s much worse than my reactions to gluten prior to going gluten free (which is understandable since my body probably got used to tolerating constant glutening), and it’s happening at least once a week even though I’m getting progressively more and more careful about anything I put in my body - sometimes I can’t even identify what might have caused the glutening reaction.

For background, I’ve been checked for celiacs at the doctor before I started going gluten free and that came out negative, so AFAIK I have non celiac gluten sensitivity technically.

Is this extreme reaction normal after going gluten free? Does it get better over time? It’s pretty frustrating because I still can’t trust my body to be healthy consistently with how often this happens.

[cyclinglady]

Welcome!  

Exactly which celiac blood tests were given?  If your PCP had ordered only a screening TTG test, then your diagnosis for celiac disease may have been missed.  Also, about 10% of celiacs are seronegative.  I hope it was your GI who suggested going gluten free and not your PCP.  

Reactions to gluten do become more severe the longer you stay away from gluten.  Cross contamination is a huge issue for celiacs.  Like I never eat out except at dedicated restaurants.  

[Bbbhfd]

Hey! I was tested for the following via my PCP, all of which came out negative. 

Tissue Transglutaminase Antibody, IgA, Gliadin Ab IgA, Deamidated, Gliadin Ab IgG, Deamidated, Tiss. Transglutamin. IgG. 

What other tests would be recommended to further test for a celiac diagnosis?

Do my symptoms seem to align with the severity of gluten reactions for celiac patients? For example, I had a bite of tofu made with a korean paste with wheat in it, and separately a single carrot that was in a bag with some fried chicken wings, each of which gave me significant symptoms that lasted for 3 days. 

 

 

[cyclinglady]

Severity depends on the celiac.  Some celiacs are asymptomatic.  For me, a celiac disease reaction can last weeks or months.  It triggers my other autoimmune disorders.  

You had most of the celiac tests.  The last is the EMA, but the DGP and TTG are superior.  Do you have any other risk factors for celiac disease?  

You might consider looking into a FODMAP diet and you might want to rule out a wheat allergy which is different from celiac disease.  And you might be one of the seronegative celiacs.  If the diet does not help, please see your doctor.  

 

Edited January 17, 2020 by cyclinglady

[MisterSeth]

I'm on whole foods and things that say "gluten free" for the most part now. certain things like pepsi and coke soft drinks don't say gluten free but they are, fancy sodas might have malt.

[BuddhaBar]

We're in the same boat! When I started my gluten free diet 7 months ago I ate foods with glucose sirup, modified starch, dextrose etc and was doing fine. Symptoms started to disappear one by one and I felt I got healthier pretty quickly. Then, for some weird reason, I started to react to traces of gluten too and had to exclude a lot more foods. A regular gluten free diet is not enough for me. I have to read the labels on everything. The only bread I can eat are those marked "wheat free". If there is modified wheat starch I can't eat it.
My reactions to gluten has changed too. Before diagnosis, I mainly had gastrointestinal symptoms like bloating, diarrhea, acid reflux and all those classic ones, but since I went gluten free my reactions are mostly psychological and neurological with only minor gastrointestinal issues like moderate diarrhea and a slight discomfort in my stomach.

Try to exclude all foods with traces of gluten. The labels don't always say there is traces of gluten in the food, but things like glucose sirup, modified starch, dextrose and maltodextrin can contain traces of gluten. They say that those ingredients are so processed and modified that the gluten is gone, but some of us react to only a microscopic trace. Read the label on everything. 

[MisterSeth]

in USA does it still just refer to it as "modified food starch"? its always corn starch in canada, but im not 100% on whether they have to mention traces of wheat or not like they do nuts

[kareng]

49 minutes ago, MisterSeth said:

in USA does it still just refer to it as "modified food starch"? its always corn starch in canada, but im not 100% on whether they have to mention traces of wheat or not like they do nuts

In the US, they have to label wheat.  

[BuddhaBar]

52 minutes ago, MisterSeth said:

in USA does it still just refer to it as "modified food starch"? its always corn starch in canada, but im not 100% on whether they have to mention traces of wheat or not like they do nuts

In Europe they don't have to mention the origin of the starch if the gluten content is 20ppm or lower as most celiacs can handle that small amount of gluten. However, some celiacs (like me) can't even handle that tiny amount. 

[LaLa Princess of Power]

16 hours ago, Bbbhfd said:

Hey! I was tested for the following via my PCP, all of which came out negative. 

Tissue Transglutaminase Antibody, IgA, Gliadin Ab IgA, Deamidated, Gliadin Ab IgG, Deamidated, Tiss. Transglutamin. IgG. 

What other tests would be recommended to further test for a celiac diagnosis?

Do my symptoms seem to align with the severity of gluten reactions for celiac patients? For example, I had a bite of tofu made with a korean paste with wheat in it, and separately a single carrot that was in a bag with some fried chicken wings, each of which gave me significant symptoms that lasted for 3 days. 

 

 

I went gluten free many years ago before the blood tests were available. My Gram & Aunt had been diagnosed Celiac and I was having some joint & tendon inflammation issues that I thought might be related to that. I ended up not ever having the blood test or the biopsy, I had already stopped gluten completely and was not willing to poison myself for 2 weeks to get the markers to flare up. When I finally did a 23&me DNA test, that came up as me having the gene for celiac... so most likely a yes for me considering I have the gene and so far 3 generations of my family have been diagnosed :-(  After stopping the gluten, I too became extremely sensitive. I've never purposefully eaten even a crumb of gluten in the past 13 years, but I have severe GI reactions to cross contamination. These examples you mentioned about the wheat sauce and the carrot that touched the breaded wing, 100% no-go for me. Anytime I eat out or at a friends house, I am careful to avoid as much cross contamination as possible and I take gluten enzymes, Beano & gasX as a preventative. But anytime I eat something that is prepared by someone other than me in a non-dedicated gluten free facility... there's a high probability I will get sick.

[Fenrir]

6 hours ago, MisterSeth said:

in USA does it still just refer to it as "modified food starch"? its always corn starch in canada, but im not 100% on whether they have to mention traces of wheat or not like they do nuts

It's supposed to be specified as corn/wheat here but I do see items pretty often labelled just "modified food starch".  Unless it states specifically corn, I stay away from it. 

[Fenrir]

For the OP,

Yes, if you're gluten sensitive or a celiac, you tend to react stronger to gluten than before you went gluten-free. 

I get even a the slightest bit of cross contamination I get headaches for a few days and terrible reflux for a month. I got a mouth full of gluten bread by accident once and it made me puke my guts out for about 3 days and crippling pain. Then I was nauseated for a few weeks afterward. NOT GOOD.?

[MisterSeth]

can someone explain to me the equipment that cross contaminates everything with gluten? i know oats aren't safe unless certified. but im hearing chicken and all kinds of weird stuff somehow goes through the same machine

[RMJ]

The chance for cross contamination depends on each manufacturer and product. Some companies have dedicated production lines for gluten free products, some use the same lines for gluten-containing and gluten free products.  When multiple products are processed on the same equipment there is a chance for cross contamination, although some manufacturers clean the equipment so well that their products can be certified gluten free (Nature’s Path cereal).  Sometimes the equipment isn’t shared, but there may be wheat in other parts of the facility.  Much less risk for cross contamination, but still some.

Oats are a little different. Contamination can start in the field where they are grown (because wheat was previously grown there) or the trucks in which the grain is transported.

 

[Fenrir]

1 hour ago, MisterSeth said:

can someone explain to me the equipment that cross contaminates everything with gluten? i know oats aren't safe unless certified. but im hearing chicken and all kinds of weird stuff somehow goes through the same machine

Essentially, sometimes food manufacturers will make something like cookies on the equipment, then all or some of the same equipment is used to make or package other things (like oat or nuts).

Sometimes they clean equipment between , sometimes they don't and even if they clean equipment it's not guaranteed to be gluten free.

On food labels they often label it like:

Processed in a facility that processes wheat products (generally not made or processed on equipment with wheat products)

Processed on equipment used for wheat products 

Generally speaking, meat should be ok without any seasonings or breading. They generally don't process meat on same equipment as other types of food unless it's at least partially prepared (like seasoned, breaded..ect). If it's just chicken or steak...ect it's fine.

[kareng]

1 hour ago, MisterSeth said:

can someone explain to me the equipment that cross contaminates everything with gluten? i know oats aren't safe unless certified. but im hearing chicken and all kinds of weird stuff somehow goes through the same machine

Oats are harvested and stored in the same equipment as wheat .  
 

but I think people have no clue about how stuff is made.  I have seen people sure that bread is made on The same machine as cheese or milk or chicken.   It wouldn’t even be made In The same building!   I think we should use a little common sense.   A machine that makes cookies can’t be used to shell, roast, salt and package nuts.  A factory that makes margarine can’t make anything else- it’s too greasy!  

Edited January 18, 2020 by kareng

[Fenrir]

6 minutes ago, kareng said:

Oats are harvested and stored in the same equipment as wheat .  
 

but I think people have no clue about how stuff is made.  I have seen people sure that bread is made on The same machine as cheese or milk or chicken.   It wouldn’t even be made In The same building!   I think we should use a little common sense.   A machine that makes cookies can’t be used to shell, roast, salt and package nuts.  A factory that makes margarine can’t make anything else- it’s too greasy!  

I would disagree with some of this. 

There are nuts sold everywhere that are specifically labeled "processed on equipment used for wheat products". If they weren't using the machines for making wheat products they wouldn't bother labeling them that way. It may be candy or something and not cookies but we don't really know for sure. Either way it's probably cross contaminated. 

[kareng]

5 minutes ago, Fenrir said:

I would disagree with some of this. 

There are nuts sold everywhere that are specifically labeled "processed on equipment used for wheat products". If they weren't using the machines for making wheat products they wouldn't bother labeling them that way. It may be candy or something and not cookies but we don't really know for sure. Either way it's probably cross contaminated. 

My understanding about nuts is that it is similar to non- gluten-free oats.  They are using some of the same storage and moving containers, etc.  

[Fenrir]

2 minutes ago, kareng said:

My understanding about nuts is that it is similar to non- gluten-free oats.  They are using some of the same storage and moving containers, etc.  

Very well could be but that's still "equipment". Might not be they manufactured on the same equipment but somewhere in the process of making them and getting them to market they are using common "equipment". 

Semantics I guess, important thing is for people to be aware of the cross contamination. 

I agree on the meat part though, they generally are not storing, transporting or processing meat on equipment used for wheat products. It would be a horrible food poisoning risk for one thing. 

[MisterSeth]

It sounds like the equipment in most places would be pretty easy to clean if its made of metal. but if cross contamination with oats starts in the field you could literally just have a wheat stock in the batch which is totally different than the trace contamination I was worried about

[Fenrir]

Even cleaning the equipment is potentially problematic. 

I never buy anything that says specifically that it is being used for wheat products as well. 

[rt-116]

On ‎1‎/‎17‎/‎2020 at 7:47 AM, BuddhaBar said:

We're in the same boat! When I started my gluten free diet 7 months ago I ate foods with glucose sirup, modified starch, dextrose etc and was doing fine. Symptoms started to disappear one by one and I felt I got healthier pretty quickly. Then, for some weird reason, I started to react to traces of gluten too and had to exclude a lot more foods. A regular gluten free diet is not enough for me. I have to read the labels on everything. The only bread I can eat are those marked "wheat free". If there is modified wheat starch I can't eat it.
My reactions to gluten has changed too. Before diagnosis, I mainly had gastrointestinal symptoms like bloating, diarrhea, acid reflux and all those classic ones, but since I went gluten free my reactions are mostly psychological and neurological with only minor gastrointestinal issues like moderate diarrhea and a slight discomfort in my stomach.

Try to exclude all foods with traces of gluten. The labels don't always say there is traces of gluten in the food, but things like glucose sirup, modified starch, dextrose and maltodextrin can contain traces of gluten. They say that those ingredients are so processed and modified that the gluten is gone, but some of us react to only a microscopic trace. Read the label on everything. 

Please could you describe your psychological and neurological reactions since going gluten free?

[BuddhaBar]

rt_116:

Psychological: brain fog, feeling that reality is unreal/like a dream, anxiety attacks, insomnia.

Neurological: painless muscle twitching, pins and needles, buzzing sensation in legs

[rt-116]

3 hours ago, BuddhaBar said:

rt_116:

Psychological: brain fog, feeling that reality is unreal/like a dream, anxiety attacks, insomnia.

Neurological: painless muscle twitching, pins and needles, buzzing sensation in legs

Thank you for posting this. I think I have similar reactions to this. 

[MisterSeth]

I went to the doctor trying to get an adult ADHD diagnoses because of the brain fog. ended up with a generalized anxiety deal, they gave me some SSRIs. sort of worked but not really. yeah so paranoid and neurotic that I would need to have a theory to present to the doctor before even seeing them