Gluten after all?

[Femke]

I have a whole lot of issues that can partly be explained by trauma. But I feel there is a physical problem too. 
 

I have ptsd, psychosis, brain fog, mood problems, fatigue, executive disfunction, ibs, pms, myoma, anemia, etc. 

I have intuitively said I was dairy and gluten intolerant for years, but nobody would believe me. Even I didn’t because they talked it out of my head. 

A few foods diet (rice, turkey, water, pear, mango, lettuce) did miraculous stuff. As did keto. But sticking to diet was hard, not knowing what the culprit was. And what the right diet. 
 

I finally got tested and was dairy intolerant, but not celiac. Cutting dairy is great, if I now eat milk products I have extreme anger and depression. But I felt there was more. My ibs and emotional responses to food were still there. 
 

I just cut gluten. And I felt great after 2-3 days! Clear mind, joyful, energetic, better belly. It’s always like that when I cut them. Better than in ages…until I crashed. My mood is horrible. And it feels like I am clear for a day, then eat something wrong (now a gluten-free sesame bar) and I feel horrid emotionally. 

- Is it possible for a celiac test to be wrong? Or maybe I have ncgs? 
- Can this be withdrawal? I had the same when cutting dairy. 
- Can it be there’s something else? Histamine? I react to a lot. How do I find out? 
- Can it be that when quitting gluten somehow your response to other stuff gets worse?? 
 

I really feel it is food. Today I felt fine. I ate mostly fruits. Then I had the sesame bar. And bam - half an hour later - crying, depression, anger, planning to kill myself. That’s a bit…inconvenient. 
 

Eh. Help? 

 

[trents]

If you were tested for celiac disease while eating a no or a low gluten diet then the testing would not have been valid.

[Femke]

Thanks. I was not gluten-free at the time, or extremely low gluten. 

It was a blood test. 

My only clue is a rather immediate (2-3 days) bettering of my ibs and lifting of brain fog when I quit.  Every time. 

[Femke]

https://www.beyondceliac.org/research-news/can-you-trust-negative-blood-test/

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Femke]

Not sure I had that much. 

I would hate going back though. My belly pain is less. My clarity is better. And I have a weird aversion of going back on gluten. I crave it, but also feel weird aversion. 

[Femke]

I thought about it. And I will not be retested. I’ve been on and off multiple times. And my GI issues are just better without. 

Im also more clearheaded. 

And while there’s moments of depression, there’s clarity and waves of peace of mind, that I do not know when eating grain. 

[Scott Adams]

If your symptoms improve without gluten then you likely have your answer. 

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

[Femke]

Thanks.

Yes I think it’s rather that. I read that the celiac blood test has a 10% or so chance of missing celiac, especially milder variants. But eating gluten-free is eating gluten-free. Whatever the reason, it helps. 

I do feel I should seek a stricter elimination diet still. Because there’s still flare ups of my belly pain and depression after certain foods. But at least I notice I have a flare up, rather than 24/7 issues. 

[AshyCo]

5 hours ago, Femke said:

Not sure I had that much. 

I would hate going back though. My belly pain is less. My clarity is better. And I have a weird aversion of going back on gluten. I crave it, but also feel weird aversion. 

I have the same… I was tested for celiac and it came back negative. Everyone was positive I had celiac but yet it was negative. I also know how you feel about going back on gluten… I have a lot of the things you have but I also have swelling, cold, pain, blue and purple legs…

What’s the possibility of Postural Orthostatic Tachycardia Syndrome-Pots? I’ve wondered abt this for myself..

I still don’t understand how my test was negative🧐

[Femke]

Sorry for suffering that. Could be a false negative or non celiac gluten sensitivity.

For myself I dont think pots. I rather think of a problem with histamine/mast cells. I have also got very low iron, that increases such problems.

I have very weird fluctuations, where I am fine, then a food or smell triggers a weird physical/emotional response. It feels like my brain is on fire at such times. . 

[AshyCo]

3 minutes ago, Femke said:

Sorry for suffering that. Could be a false negative or non celiac gluten sensitivity.

For myself I dont think pots. I rather think of a problem with histamine/mast cells. I have also got very low iron, that increases such problems.

I have very weird fluctuations, where I am fine, then a food or smell triggers a weird physical/emotional response. It feels like my brain is on fire at such times. . 

Ohhh I see!

well I truly hope you can get answers and help! It’s got to be devastating to be okay then all the sudden not okay!

[Femke]

Not sure what to do. 
 

I was getting very depressed and angry. Suicidal. I’m in a crucial moment of big decisions. Crashing is not an option at this moment. 
 

I ate gluten. 
 

My depression and anger lifted somewhat. But nearly immediately all my GI symptoms played up again. I’m in pain and have other issues too. The response is very clear. 
 

Any ideas? Does tapering help? 

[Femke]

It is worse than normal. Both the withdrawal and the response. I’m staying near a toilet (sorry tmi) and I’m nauseous. My brain fog is back. But my mind is no longer screaming to kill myself, which is kind of pleasant, for me and others.

[Nikki2777]

I'm so sorry you're going through this. It does sound like you've been through a lot and likely do have some sort of gluten sensitivity. Unfortunately, the mind-body connection is also having a field day with you and hopefully you're coupling your physical recovery with trauma work.

At the risk of sounding simplistic, could you also be sensitive to sesame? I know a few people who have severe reactions to sesame. And yes, I found that during the year or so after going gluten free, I had a raft of new-found sensitivities to other foods, which eventually lessened.

Good luck to you. I hope you find your answers and can stay strong.

[Scott Adams]

8 hours ago, Femke said:

Not sure what to do. 
 

I was getting very depressed and angry. Suicidal. I’m in a crucial moment of big decisions. Crashing is not an option at this moment. 
 

I ate gluten. 
 

My depression and anger lifted somewhat. But nearly immediately all my GI symptoms played up again. I’m in pain and have other issues too. The response is very clear. 
 

Any ideas? Does tapering help? 

This article, and the comments below it, may be helpful:

 

 

[knitty kitty]

On 5/13/2024 at 8:48 PM, Femke said:

 I have also got very low iron, that increases such problems.

@Femke, and @AshyCo

Do you have anemia?  

Anemia, Diabetes, and Thiamine Deficiency each will cause false negatives on Celiac blood tests.  

Have you thought about getting a DNA test done?  One doesn't have to be consuming gluten for a DNA test which looks for the most common genes for Celiac Disease.  A positive DNA test and positive response to a gluten free diet can be used as a diagnosis of Celiac Disease.  

On 5/13/2024 at 7:03 PM, AshyCo said:

I have the same… I was tested for celiac and it came back negative. Everyone was positive I had celiac but yet it was negative. I also know how you feel about going back on gluten… I have a lot of the things you have but I also have swelling, cold, pain, blue and purple legs…

What’s the possibility of Postural Orthostatic Tachycardia Syndrome-Pots? I’ve wondered abt this for myself..

I still don’t understand how my test was negative🧐

Yes, Postural Orthostatic Tachycardia Syndrome POTS can be a problem in Celiac Disease.  POTS has a connection to Thiamine deficiency.  

Since people with Celiac Disease don't absorb nutrients well, Thiamine deficiency can occur quickly.   

Cravings for gluten foods may be for the opioid effect of gluten, but also for the vitamins added to gluten products.  Products made with gluten containing grains are required by governments to be enriched and fortified with vitamins and minerals lost in processing.  Food manufacturers use shelf stable forms of vitamins.  Light of any kind will break down B vitamins.  This is why B vitamins are sold in colored or opaque bottles.  Shelf stable forms of vitamins don't break down in light.  (That's why bread can be sold in transparent plastic bags.) The self stable vitamins also don't convert very well to useable forms in our bodies, however, our bodies still crave them.  

Our bodies require nine water soluble vitamins, four fat soluble vitamins and a baker's dozen of minerals.  Talk to your doctor and nutritionist about supplementing with vitamins and minerals while healing.

@Femke said, "I rather think of a problem with histamine/mast cells." 

Yes, high histamine and mast cell activation syndrome can be a problem in Celiac Disease.  Again, there's a connection to Thiamine deficiency.  Thiamine is needed by the mast cells in order to NOT Release histamine. 

Histamine is made and released as part of the autoimmune response to gluten and in allergic reactions.  Some of us also react to dairy because Casein, a protein in dairy, resembles gluten and will trigger a reaction the same as to gluten. 

As @Nikki2777 pointed out, sesame seeds can trigger histamine release because it's one of the top ten allergens.  

Histamine in a useful neurotransmitter.  Histamine release causes us to wake up and become alert.  Coffee is high in histamine.   However, high levels of histamine in the brain can cause psychosis and mental health problems.  

Our bodies can make histamine, but we also can consume foods that contain high levels of histamine.  Yes, plants make histamine, too. 

I found it very helpful to follow a low histamine Paleo diet while healing.  Eating Low Histamine foods allow the body time to clear the histamine in the body.  

Our bodies need those eight essential B vitamins and Vitamin C to break down and clear histamine.  B Vitamins are needed to make Diamine Oxidase (DAO), an enzyme that breaks down histamine.  We also need Vitamin D which regulates the immune system and lowers inflammation and improves depression.  

@Femke said, "I have ptsd, psychosis, brain fog, mood problems, fatigue, executive disfunction, ibs, pms, myoma, anemia, etc." 

These are symptoms of deficiencies in B vitamins, especially Thiamine, Vitamin B1.

References:

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

The effect of vitamin D supplementation on the size of uterine leiomyoma in women with vitamin D deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6619469/

Vitamins and Minerals for Energy, Fatigue and Cognition: A Narrative Review of the Biochemical and Clinical Evidence

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7019700/