The mental toll

[AutumnSky]

Recently completed another endoscopy. Still have the duodenitis and lymphocytosis but the metaplaysia has improved. 

My doctor said the celiac test was still negative but the intraepithelial  lymphocytosis and duodenitis along with carrying the gene and all of my symptoms, she said she would bet I'm developing celiac disease. 

So basically like what happened to my grandmother. Her health really took a down turn in her 40s but wasn't diagnosed until she was 73 through biopsy. 

But of all of the symptoms that I have experienced, they mental health symptoms have been the worst. 

In 2019 I was diagnosed with ataxia of unknown cause by a neurologist. I had a tremor for over a year. I also had balance issues, anxiety and panic attacks. Insomnia, major depression. It was bad and nobody could really pinpoint what was wrong. Now I believe it was the gluten. 

Did any of you notice your mental health symptoms improve after going gluten free? 

 

 

[Scott Adams]

Definitely, I also had many of the symptoms you mentioned, including panic attacks and gluten ataxia--most of my symptoms improved after 2-3 years gluten-free.

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

[CindyLF]

Diagnosed at 68. I had all of the symptoms you describe and more. Numbness in hands, brain fog, sensitivity to sound and light, weight loss, extremely painful mouth sores, numbness on tip of tongue, panic attacks, severe depression, anxiety, insomnia, intrusive thoughts... the list was endless. 

I'm now 71 and after three years of a strict gluten-free diet with no cross contamination, ALL of these symptoms are gone for the most part. 

Please know that life does get better and you will be well again by sticking to a totally gluten free diet and being super vigilant about cross contamination. I didn't  think I would ever enjoy life again, It took about two years before I did. You can get well too!

[CindyLF]

I would also like to mention that taking vitamin and mineral supplements helps to restore those that have been depleted by the disease. Especially B12, D3, magnesium and potassium. 

[Scott Adams]

It’s great to hear such a positive recovery story, especially from someone who discovered this disease at a later stage in life. 

[Nicole Maree]

Ive been recently diagnosed with blood tests as celiac disease and awaiting a biopsy and colonoscopy.  I am experiencing high anxiety and brain fog this week, nausea and fatigue.  I've consumed something with gluten during the week- its now Sunday and the nausea is still present and the fatigue (anxiety not to bad today).  I consumed steak on the Wednesday night with blue cheese and just wondering if it's this - it seems also that my tolerance to red meat has declined and I can't seem to eat it like I am used to.  What is the best form of therapy to get through this reaction.

[knitty kitty]

@Nicole Maree,

Dairy products can cause a reaction as though you've eaten gluten because casein (a protein in dairy) resembles gluten and the same autoimmune response happens.  

Do not eat dairy with meat.  The digestive enzymes that digest meat also digest Lactase (the digestive enzyme that digests dairy). 

Thiamine insufficiency symptoms include fatigue, nausea, confusion, and anxiety.  

Take Benfotiamine, Vitamin B1, and a B Complex.  Benfotiamine has been shown to promote intestinal healing.  The eight B vitamins in a B Complex are generally low in the gluten free diet.  

Talk to your doctor about supplementing with vitamins while healing.  

Hope this helps!

[trents]

2 hours ago, Nicole Maree said:

Ive been recently diagnosed with blood tests as celiac disease and awaiting a biopsy and colonoscopy.  I am experiencing high anxiety and brain fog this week, nausea and fatigue.  I've consumed something with gluten during the week- its now Sunday and the nausea is still present and the fatigue (anxiety not to bad today).  I consumed steak on the Wednesday night with blue cheese and just wondering if it's this - it seems also that my tolerance to red meat has declined and I can't seem to eat it like I am used to.  What is the best form of therapy to get through this reaction.

Welcome to the forum, @Nicole Maree! Did you mean to say you are awaiting a "colonoscopy"? A colonoscopy cannot be used to check for celiac disease. Celiac disease damages the lining of the small bowel and a colonoscopy cannot reach up that far. They used an endoscopy for that. But maybe you are also having a lower GI scoping done to check for other possible issues.

When is you biopsy scheduled for? Did anyone tell you that you must be eating generous amounts of gluten (10g daily, or the equivalent of 4-6 slices of bread) for at least two weeks leading up to the day of that procedure? If you go gluten free ahead of that very far, the villous lining of the small bowel will begin to heal and the biopsy may show a false negative. This might present the problem of conflicting evidence when compared with the blood antibody testing results. The biopsy is used to confirm the results of the blood antibody testing.

[Nicole Maree]

3 hours ago, knitty kitty said:

@Nicole Maree,

Dairy products can cause a reaction as though you've eaten gluten because casein (a protein in dairy) resembles gluten and the same autoimmune response happens.  

Do not eat dairy with meat.  The digestive enzymes that digest meat also digest Lactase (the digestive enzyme that digests dairy). 

Thiamine insufficiency symptoms include fatigue, nausea, confusion, and anxiety.  

Take Benfotiamine, Vitamin B1, and a B Complex.  Benfotiamine has been shown to promote intestinal healing.  The eight B vitamins in a B Complex are generally low in the gluten free diet.  

Talk to your doctor about supplementing with vitamins while healing.  

Hope this helps!

Thanks for this I seriously thought I was loosing my mind.  The anxiety creeps up more because of the pain, I was doing so great for 3 weeks prior to this.  I really have to up my knowledge on what I can and can't eat, because the last few days have been an absolute write of.  I've found in reallyhard here in Australia to find a good Nutritionist Dr to advice of what to eat.

[knitty kitty]

@Nicole Maree,

Here are a few articles to get you started...

The Autoimmune Protocol Diet really made a big difference, I felt much better quickly following this diet...

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet#what-it-is

And....

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/

And...

Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

 

[Sheila G.]

It is a terrible feeling when we find out we have gluten eating problems.  I had the covid in February 2023 and within a week, my belly bothered me.  I pretty much started looking into what to eat and what not to eat.  Since it is over a year now, I know what gluten makes me feel.  A grocery store named Lowe's Grocery here on the east coast is wonderful about quantity and qualities and items have large tags saying "gluten free ".  One advice is on frozen food gluten-free is they have loads of carbs,,,way yo many for anyone.  Good luck in everyone's journey.

[oliver2023]

On 7/6/2024 at 10:17 PM, knitty kitty said:

@Nicole Maree,

Dairy products can cause a reaction as though you've eaten gluten because casein (a protein in dairy) resembles gluten and the same autoimmune response happens.  

Do not eat dairy with meat.  The digestive enzymes that digest meat also digest Lactase (the digestive enzyme that digests dairy). 

Thiamine insufficiency symptoms include fatigue, nausea, confusion, and anxiety.  

Take Benfotiamine, Vitamin B1, and a B Complex.  Benfotiamine has been shown to promote intestinal healing.  The eight B vitamins in a B Complex are generally low in the gluten free diet.  

Talk to your doctor about supplementing with vitamins while healing.  

Hope this helps!

Hi Knitty, Does dairy trigged reaction damage intestine as the wheat does for celiac patient? Because I started to eat milk not long ago, and initially, I felt fine. Then, I recently experienced severe diarrhoea. But I'm not sure what caused this.

[knitty kitty]

Yes, unfortunately, the dairy protein casein can cause damage to the villi lining the intestines just like gluten.

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

 

[oliver2023]

31 minutes ago, knitty kitty said:

Yes, unfortunately, the dairy protein casein can cause damage to the villi lining the intestines just like gluten.

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

 

Thank you for your information. I have stopped eating milk and I'm monitoring the development. It's just so frustrating to deal so many restrictions.