Should I go back?

[Javid]

I am a 28 y.o male and all my life I have been very thin, had extremely weak muscles and digestion issues. I literally checked everything but couldn't find anything that could cause all that. My vitamin D levels are extremely low as well. 

Recently I thought I might have Celiac or NCGS so I started a gluten free diet. Mind I say I wanted to get tested for it but in my country these type of tests are extremely expensive. So I thought instead of going way out of my budget I should just cut gluten out of my diet and see how I feel. 

After I stopped eating gluten (today is my 12th day) my stool almost immediately got better. I haven't had diarrhea which I used to have all the time.  

In terms of mood swings and energy level I don't think I have improved that much. It's mainly my stool and bloating problems that have improved.

Now I'm wondering if I really do have Celiac or gluten sensitivity. I want to start eating gluten again and go get tested even though it is way out of my budget just to be sure. 

I need your guidance guys. Should I stay gluten free for much longer to see the further improvements? Or should I start eating gluten just to get tested? Because I don't want to waste 12 days I stayed gluten free. 

[Scott Adams]

Welcome to the forum!

I usually try to steer people to get tested, but if the cost is a big factor, then why not just experiment more with the diet? Add gluten back and see what happens.

The problem with testing is that around 1% of people have celiac disease, and may test positive for it with blood tests and possibly with a biopsy, but around 10x more have non-celiac gluten sensitivity, and you can't test for that yet (they are working on a test for this). So even if you pay for a celiac blood test it may be negative, but you still may have NCGS and need to go gluten-free anyway.

[trents]

1 hour ago, Javid said:

I am a 28 y.o male and all my life I have been very thin, had extremely weak muscles and digestion issues. I literally checked everything but couldn't find anything that could cause all that. My vitamin D levels are extremely low as well. 

Recently I thought I might have Celiac or NCGS so I started a gluten free diet. Mind I say I wanted to get tested for it but in my country these type of tests are extremely expensive. So I thought instead of going way out of my budget I should just cut gluten out of my diet and see how I feel. 

After I stopped eating gluten (today is my 12th day) my stool almost immediately got better. I haven't had diarrhea which I used to have all the time.  

In terms of mood swings and energy level I don't think I have improved that much. It's mainly my stool and bloating problems that have improved.

Now I'm wondering if I really do have Celiac or gluten sensitivity. I want to start eating gluten again and go get tested even though it is way out of my budget just to be sure. 

I need your guidance guys. Should I stay gluten free for much longer to see the further improvements? Or should I start eating gluten just to get tested? Because I don't want to waste 12 days I stayed gluten free. 

You already know that gluten is bad for you because when you stop eating it you get better. The only thing you don't know is whether you have celiac disease or NCGS. But the antidote is the same. Total abstinence from gluten for life. What would change if you tortured yourself by going back on gluten to get tested? The only difference would be that your wallet would be lighter.

It often takes up to two years for full healing of the villi in the case of celiac disease once you go truly gluten free. In the meantime you would be wise to add in some gluten free vitamin and minerals supplements. At least 5000IU of D3, a high-potency B-complex and magnesium (magnesium glyclinate is a good highly absorbable form).

[Wheatwacked]

Continue to eat gluten free. Because gluten is addictive, your subconscious brain will find all sorts of reasons to eat wheat, barley or rye.  There is none. It does you harm.

Now you need to address your specific vitamin and mineral deficiencies.

 

[Javid]

10 hours ago, Scott Adams said:

Welcome to the forum!

I usually try to steer people to get tested, but if the cost is a big factor, then why not just experiment more with the diet? Add gluten back and see what happens.

The problem with testing is that around 1% of people have celiac disease, and may test positive for it with blood tests and possibly with a biopsy, but around 10x more have non-celiac gluten sensitivity, and you can't test for that yet (they are working on a test for this). So even if you pay for a celiac blood test it may be negative, but you still may have NCGS and need to go gluten-free anyway.

Dear Scott, thank you so much for your reply. I really appreciate your advice. I think you have done a huge thing for humanity with this website. I spend hours reading all the forums here and understand about Celiac or NCGS. 

[Javid]

9 hours ago, trents said:

You already know that gluten is bad for you because when you stop eating it you get better. The only thing you don't know is whether you have celiac disease or NCGS. But the antidote is the same. Total abstinence from gluten for life. What would change if you tortured yourself by going back on gluten to get tested? The only difference would be that your wallet would be lighter.

It often takes up to two years for full healing of the villi in the case of celiac disease once you go truly gluten free. In the meantime you would be wise to add in some gluten free vitamin and minerals supplements. At least 5000IU of D3, a high-potency B-complex and magnesium (magnesium glyclinate is a good highly absorbable form).

Dear Trent, thanks a lot for the very useful tips. I have grown to absolutely hate gluten now. If it really is the thing that has made me suffer all my life, I never ever want to touch that thing again. Thank God I live alone so I don't have to compromise with my family's gluten eating habits. I have gotten rid of everything with gluten. 

I have already seen some improvements on my skin as well. I feel like my dry skin has gotten a little better but I am not sure if it is the gluten free diet or not. So I am planning to continue and stay gluten free for at least a month before I try some bread and see how it affects me. 

I am taking Vitamin D3 right now and it has helped me a lot with stabilizing my mood. Going to order vitamin B and Magnesium as well. Thank you so much! 

 

[trents]

5 hours ago, Javid said:

Dear Trent, thanks a lot for the very useful tips. I have grown to absolutely hate gluten now. If it really is the thing that has made me suffer all my life, I never ever want to touch that thing again. Thank God I live alone so I don't have to compromise with my family's gluten eating habits. I have gotten rid of everything with gluten. 

I have already seen some improvements on my skin as well. I feel like my dry skin has gotten a little better but I am not sure if it is the gluten free diet or not. So I am planning to continue and stay gluten free for at least a month before I try some bread and see how it affects me. 

I am taking Vitamin D3 right now and it has helped me a lot with stabilizing my mood. Going to order vitamin B and Magnesium as well. Thank you so much! 

 

Glad to hear you are picking up on the vitamin/mineral supplementation. All of the nutrients from the food we eat is absorbed in the same area of the intestinal track that is damaged by celiac disease. So, development of nutritional deficiencies over time is part of celiac disease and is responsible for many of the symptoms associated with it. NCGS also seems to cause neurological symptoms in some people even though no damage is done to the small bowel villi. We don't know yet what is the mechanism of NCGS.

[Flash1970]

On 5/11/2022 at 3:49 PM, Javid said:

I am a 28 y.o male and all my life I have been very thin, had extremely weak muscles and digestion issues. I literally checked everything but couldn't find anything that could cause all that. My vitamin D levels are extremely low as well. 

Recently I thought I might have Celiac or NCGS so I started a gluten free diet. Mind I say I wanted to get tested for it but in my country these type of tests are extremely expensive. So I thought instead of going way out of my budget I should just cut gluten out of my diet and see how I feel. 

After I stopped eating gluten (today is my 12th day) my stool almost immediately got better. I haven't had diarrhea which I used to have all the time.  

In terms of mood swings and energy level I don't think I have improved that much. It's mainly my stool and bloating problems that have improved.

Now I'm wondering if I really do have Celiac or gluten sensitivity. I want to start eating gluten again and go get tested even though it is way out of my budget just to be sure. 

I need your guidance guys. Should I stay gluten free for much longer to see the further improvements? Or should I start eating gluten just to get tested? Because I don't want to waste 12 days I stayed gluten free. 

Keep going gluten free.  It takes months to get  fully better.  Sometimes grains can cause a lot of problems too.  I never got fully better until I dropped all grains. Keep gluten free for sure for at least 4 months and see if your symptoms improve.  

[Javid]

I have been thinking I have Celiac for a while. Because I have had almost every single known symptom of it. I was a very thin child, always struggled with mental health, dental and digestion problems. And when I found out about Celiac I thought I definitely had it. 

I went gluten free for two weeks and my gastrointestinal problems got better even though there wasn't much change mental health wise. I was so convinced I had it so I wanted to have an official diagnosis. Therefore I started eating gluten again for three weeks and got tested. 

Here are my test results:

I was very very low on Vitamin D which I got tested couple of months earlier (not together with Celiac panel).

Immunoglobulin A (IgA) - 230

Tissue transglutaminase, IgA   <2,0

Tissue transglutaminase, IgG   0,04

Gliadin (deamidated) antibodies IGA Negative

Gliadin (deamidated) antibodies IgG Negative

Endomysial antibodies IgA - negative

Endomysial antibodies IgG - negative

 

Every single thing here indicates that I don't have Celiac and it makes me very very confused. In my country there are not many good doctors especially who are familiar with Celiac or NCGS. My doctor is saying I just have gastritis. I'm sorry but I don't trust a single word he's saying. 

Celiac could have been an answer to a lot of my problems in life now I'm so dumbfounded that I don't have it. Why have I been very skinny all my life? Why have I always had anxiety problems? Why is it hard for me to gain muscle? Why am I tired all the time? 

I think I might have Non Celiac Gluten Sensitivity but can NCGS have the exact same symptoms as Celiac? Especially the mental problems? Another part of me is saying I have a mental disorder like Generalized Anxiety Disorder which affects my body. I have been to many docs and psychiatrists before and none of them seem to give me an answer I desperately need. 

BTW, I did get tested for food allergies as well and results are saying I am not allergic to anything. 

I need you guys' advice to move on with me life.

I am currently taking vitamin supplements.

 

[Scott Adams]

I merged your topics, because they are very similar, but thank you for sharing your celiac test results, which appear to be negative, but I can't tell for sure because it's not clear to me your score vs. the reference range marker for celiac disease used for each test. I will assume that they are all negative, as your doctor has indicated.

You mentioned earlier in this thread that your symptoms were improving on a gluten-free diet. Is this still the case? If so, I'd continue with it, and just make sure that everything you consume, including vitamins, medications, etc., are gluten-free. If your symptoms continue to improve, then you would likely fall into the NCGS group.

[trents]

The other thing, Javid, is that you were only back on gluten for three weeks before the retest. The Mayo Clinic guidelines for a pretest gluten challenge are 6-8 weeks of daily consumption of two slices of wheat bread (or the equivalent) for 6-8 weeks before tests are done.

You ask, "I think I might have Non Celiac Gluten Sensitivity but can NCGS have the exact same symptoms as Celiac? Especially the mental problems?" Celiac disease and NCGS share many of the same symptoms but not all. Both can have a negative effect on mental health. You should be on a gluten-free high-potency B-complex along with D3 and Magnesium.

[Sabaarya]

On 6/6/2022 at 6:44 AM, Javid said:

I have been thinking I have Celiac for a while. Because I have had almost every single known symptom of it. I was a very thin child, always struggled with mental health, dental and digestion problems. And when I found out about Celiac I thought I definitely had it. 

I went gluten free for two weeks and my gastrointestinal problems got better even though there wasn't much change mental health wise. I was so convinced I had it so I wanted to have an official diagnosis. Therefore I started eating gluten again for three weeks and got tested. 

Here are my test results:

I was very very low on Vitamin D which I got tested couple of months earlier (not together with Celiac panel).

Immunoglobulin A (IgA) - 230

Tissue transglutaminase, IgA   <2,0

Tissue transglutaminase, IgG   0,04

Gliadin (deamidated) antibodies IGA Negative

Gliadin (deamidated) antibodies IgG Negative

Endomysial antibodies IgA - negative

Endomysial antibodies IgG - negative

 

Every single thing here indicates that I don't have Celiac and it makes me very very confused. In my country there are not many good doctors especially who are familiar with Celiac or NCGS. My doctor is saying I just have gastritis. I'm sorry but I don't trust a single word he's saying. 

Celiac could have been an answer to a lot of my problems in life now I'm so dumbfounded that I don't have it. Why have I been very skinny all my life? Why have I always had anxiety problems? Why is it hard for me to gain muscle? Why am I tired all the time? 

I think I might have Non Celiac Gluten Sensitivity but can NCGS have the exact same symptoms as Celiac? Especially the mental problems? Another part of me is saying I have a mental disorder like Generalized Anxiety Disorder which affects my body. I have been to many docs and psychiatrists before and none of them seem to give me an answer I desperately need. 

BTW, I did get tested for food allergies as well and results are saying I am not allergic to anything. 

I need you guys' advice to move on with me life.

I am currently taking vitamin supplements.

 

Hi Javid. My whole celiac panel was negative,I got my diagnose by positive biopsy and genetic test. You should have your doctor check your celiac genes,if those are negative there is no way you have celiac disease. If you don’t mind can I ask where are you from?

Saba

[Wheatwacked]

On 6/6/2022 at 9:44 AM, Javid said:

Generalized Anxiety Disorder

That is largly your low vitamin D. 

Quote

Vitamin D supplementation ameliorates severity of generalized anxiety disorder (GAD)

one group of patients (n = 15) received standard of care (SOC) plus 50,000 IU vitamin D (once/week)

On 6/6/2022 at 9:44 AM, Javid said:

My doctor is saying I just have gastritis.

Dah!