Celiac

[Titnic]

Topic: Celiac disease
I need some serious help.. please..judge me, I don’t care…obviously, as what I’m about to say 😞 
Last year 5/2022, I was diagnosed with celiac with blood test and biopsy. since then, I developed severe depression with my life and with celiac always in the back of my mind and thus Been cheating on diet and living a “yolo” lifestyle and continue to eat gluten.. well in December, I had a follow up and confessed to my doctor that I haven’t gone gluten-free, he wanted to see where my antibodies are and they came back low..he wanted to see me in 3 months and I just saw him on Monday and lied and said I’m eating more at home to avoid cross contamination but then broke down in tears because this is more psychological hell for me and he was sweet but I’ve messaged him so many times throughout the year on the portal about “could it be this instead?” Im so afraid he is going to “fire me” as a patient.. he said don’t apologize for anything. he tested my antibodies again..and they are even lower! I’m soo confused, I’m in such denial..I swear, if someone told me I had cancer, I wouldn’t believe them 😓 I was scoped 8 years ago by another doctor within the same company and my bloodwork was off the charts high but my scope came back negative. How can I accept that I have it? this is seriously a huge problem and it’s beginning to drive me to insanity.. I have two children and I just don’t care anymore about myself and just in “survival mode.”  Why are my antibodies going down even if I haven’t followed a gluten-free diet?

[trents]

3 hours ago, Titnic said:

Topic: Celiac disease
I need some serious help.. please..judge me, I don’t care…obviously, as what I’m about to say 😞 
Last year 5/2022, I was diagnosed with celiac with blood test and biopsy. since then, I developed severe depression with my life and with celiac always in the back of my mind and thus Been cheating on diet and living a “yolo” lifestyle and continue to eat gluten.. well in December, I had a follow up and confessed to my doctor that I haven’t gone gluten-free, he wanted to see where my antibodies are and they came back low..he wanted to see me in 3 months and I just saw him on Monday and lied and said I’m eating more at home to avoid cross contamination but then broke down in tears because this is more psychological hell for me and he was sweet but I’ve messaged him so many times throughout the year on the portal about “could it be this instead?” Im so afraid he is going to “fire me” as a patient.. he said don’t apologize for anything. he tested my antibodies again..and they are even lower! I’m soo confused, I’m in such denial..I swear, if someone told me I had cancer, I wouldn’t believe them 😓 I was scoped 8 years ago by another doctor within the same company and my bloodwork was off the charts high but my scope came back negative. How can I accept that I have it? this is seriously a huge problem and it’s beginning to drive me to insanity.. I have two children and I just don’t care anymore about myself and just in “survival mode.”  Why are my antibodies going down even if I haven’t followed a gluten-free diet?

Welcome to the forum, Titnic!

There are some other medical conditions (most of them are autoimmune disorders) that can cause elevated "celiac" antibodies. To me, what points to the cause of the elevated antibodies being due to something else is the fact that your biopsy was negative. Besides depression, are you experiencing any other medical issues or unusual symptoms? I mean, there had to be some symptoms normally associated with celiac disease (or with non celiac gluten sensitivity, aka: NCGS) that moved you to get tested for celiac disease in the first place.

[Scott Adams]

The OP mentioned that she was diagnosed via blood tests and a biopsy, so it was likely a correct diagnosis. Keep in mind that the blood antibody levels in those with celiac disease who still eat gluten can fluctuate over time. What were the recent blood test results? Feel free to share them. A false positive test on your celiac disease blood panel AND biopsies would be highly unlikely.

[Titnic]

14 minutes ago, trents said:

Welcome to the forum, Titnic!

There are some other medical conditions (most of them are autoimmune disorders) that can cause elevated "celiac" antibodies. To me, what points to the cause of the elevated antibodies being due to something else is the fact that your biopsy was negative. Besides depression, are you experiencing any other medical issues or unusual symptoms? I mean, there had to be some symptoms normally associated with celiac disease (or with non celiac gluten sensitivity, aka: NCGS) that moved you to get tested for celiac disease in the first place.

My scope in 2022 was positive and showed on report “villous blunting” and “increased epithelial lymphocytes” my recent symptoms that prompted me to get tested was diarrhea, sprinting from sleep to the bathroom, migraines, and fatty, mushy stool and for years have had unexplained b12, vitamin D deficiency. Since then, it’s been a struggle, I’ve been to the ER twice for fluids due to extreme vomiting but turns out was a stomach bug- no “Glutened” it’s been very difficult

[trents]

3 hours ago, Titnic said:

😓 I was scoped 8 years ago by another doctor within the same company and my bloodwork was off the charts high but my scope came back negative. How can I accept that I have it? this is seriously a huge problem and it’s beginning to drive me to insanity.. I have two children and I just don’t care anymore about myself and just in “survival mode.”  Why are my antibodies going down even if I haven’t followed a gluten-free diet?

This is what I was referring to, Scott. Yes, the initital scope and biopsy was apparently positive but a subsequent one was not. Now, I'm assuming a biopsy was also done at this time but OP doesn't actually say that. Was this positive only a reference to visual observation during scoping?

Edited March 19, 2023 by trents

[Titnic]

12 minutes ago, Scott Adams said:

The OP mentioned that she was diagnosed via blood tests and a biopsy, so it was likely a correct diagnosis. Keep in mind that the blood antibody levels in those with celiac disease who still eat gluten can fluctuate over time. What were the recent blood test results? Feel free to share them. A false positive test on your celiac disease blood panel AND biopsies would be highly unlikely.

I don’t think I can post pics so I’ll write the results. 
3/2022- TTG-IGA was 29. (Anything above a 3 is abnormal) 

Endomysial Antibody- Positive.

scope came back in 5/2022- malabsorption pattern with partial villous atrophy and increased intraepithelial lymphocytes” 

fast forward to 12/2022

ttg/IGA was at 7.

Endomysial antibody was negative.

March of 2023- TTG was now at a 6.

 

[Titnic]

4 minutes ago, trents said:

This is what I was referring to, Scott. Yes, the initital scope and biopsy was apparently positive but a subsequent one was not. Now, I'm assuming a biopsy was also done at this time but OP doesn't actually say that.

I had a celiac panel done in 2015 and the antibodies were at 136- it prompted me to get a scope- the doctor said he “may have seen something” and pathology came back with a 100% negative result. So I continued eating a regular diet. 

[trents]

24 minutes ago, Titnic said:

My scope in 2022 was positive and showed on report “villous blunting” and “increased epithelial lymphocytes” my recent symptoms that prompted me to get tested was diarrhea, sprinting from sleep to the bathroom, migraines, and fatty, mushy stool and for years have had unexplained b12, vitamin D deficiency. Since then, it’s been a struggle, I’ve been to the ER twice for fluids due to extreme vomiting but turns out was a stomach bug- no “Glutened” it’s been very difficult

All of these symptoms are classic for celiac disease. How many biopsies have you had done? Your chronology is confusing. Please clarify.

Edited March 19, 2023 by trents

[Titnic]

2 biopsies.

first was in 2015

second was 2022 -Positive. 

[trents]

Let's cut to the chase. You have celiac disease. It has been confirmed both by antibody positives and by biopsy positives at different times and your symptoms scream celiac disease. You are in denial and you need to buck up and commit to gluten free eating. By the way, depression is one of the established symptoms of celiac disease, likely due to vitamin and mineral malabsorption. You also need to put into place some serious gluten free supplementation with vitamins and minerals. Okay, you asked for it so I'm being direct here.

[Wheatwacked]

 

2 hours ago, Titnic said:

vitamin D deficiency

Your "unexplained b12, vitamin D deficiency" is very common in Celiac Disease. Partly because of malabsoption syndrome and partly diet and avoidance of sunshine.

How low was your vitamin D? Vitamin and mineral deficiencies are often found, rarely dealt with.

First, your mental status. You need to increase your vitamin D.  Sunshine would be good , think John Denver https://youtu.be/diwuu_r6GJE.

But it is winter. Vitamin D has potent effect on mood but only when you take enough. I had to increase to 10,000 iu a day, but when I did, on the fourth day it was a "Sunshine in a bottle" moment. That was in 2015 and am still taking 10,000 a day with the approval of my doctor. Tested several times a year, steady now at 80 ng/ml.  It broke me out of close to 30 years of year round Seasonal Affective Disorder.

The other mineral that helped me with Impulse, needing to do it now, impatience, anger was 5 mg of Lithium Picolate. A study done in Texas established a pattern between low ground water Lithium by county and increased crime, suicide, and drug addiction. A recommendation of RDA between 1 and 40 mg a day is under consideration. Though your area may be fine, everyone is drinking bottled water. I suggest it is one reason mass shootings are on the uprise. 

Vitamin D and Depression: Where is all the Sunshine?

Is Lithium a Micronutrient?  For the first time, an inverse correlation between the concentration of Li in drinking water and suicide rates was recorded in the USA. 

5 hours ago, Titnic said:

How can I accept that I have it?

You will go through the stages of mourning but the D and Lithium will help.

2 hours ago, Titnic said:

fatty, mushy stool

That would be Choline. It is essential for fat digestion. Less than 10% Americans eat enough. 3 large eggs, or 12 ounces of steak or 10 cups of cooked brocolli are the minimum RDA. It also will affect brain fog (acetylcholine) and energy (most of the mitochondria membrane is phosphatidyl choline, energy factories.  Deficiency is often misdiagnosed as gall bladder problems and can cause elevated liver enzymes.

Low Thiamine (B1) can cause migranes. At first, people have vague symptoms such as fatigue and irritability, but a severe deficiency (beriberi) can affect the nerves, muscles, heart, and brain. The diagnosis is based on symptoms and a favorable response to thiamine supplements. Thiamine Deficiency 

For better energy level, it would not hurt to add:

• 500 mg Thiamine
• 500 mg Pantothenic Acid (B5)
• 1000 mcg B12
• a B complex
• 500 mg Choline

 

 

Edited March 19, 2023 by Wheatwacked

[GodsGal]

Hi Titnic,

Welcome! I agree with Trents, and I strongly encourage you to go gluten free. 

I went gluten free 3 years ago. I really struggled with it emotionally. I found that I personally had to grieve giving up gluten. While there are still times that are hard, it is getting much easier.

You can do this, my friend. I believe in you.

[Scott Adams]

21 hours ago, Titnic said:

I don’t think I can post pics so I’ll write the results. 
3/2022- TTG-IGA was 29. (Anything above a 3 is abnormal) 

Endomysial Antibody- Positive.

scope came back in 5/2022- malabsorption pattern with partial villous atrophy and increased intraepithelial lymphocytes” 

fast forward to 12/2022

ttg/IGA was at 7.

Endomysial antibody was negative.

March of 2023- TTG was now at a 6.

 

So one of your tTG results was around 10x the celiac disease positive level, and the others are at least 2x, plus you had a positive endoscopy for celiac disease, so yes, it indeed appears you most likely have celiac disease and should be 100% gluten-free. At this point see no reason why any doctor would need to run further tests to confirm this, and this article may be helpful: