Please Help Me if You Can

[Gillianannpansan]

For 3 months I had severe pains in my stomach and did not know what to do.   In desperation I decided to try eating gluten free.   I still got pain now and again.   I then ate Gluten and lactose free.   I was out of pain at last.

I went to the Doctor hoping to get a diagnosis.   He said the blood tests showed that I am not Celiac provided that I was not eating gluten free,   The problem was that I was eating gluten free when I had the blood test.   

Dr told me that I should now eat gluten because I am not Celiac but stay away from milk containing lactose.

My problem is that I am loath to try eating gluten again as I am a coward and I do not want to be in terrible pain again.   

What should I do next please?

Sincerely

Gillianannpansan

[Wheatwacked]

7 hours ago, Gillianannpansan said:

I decided to try eating gluten free.   I still got pain now and again.   I then ate Gluten and lactose free.   I was out of pain at last.

7 hours ago, Gillianannpansan said:

Dr told me that I should now eat gluten because I am not Celiac but stay away from milk containing lactose.

Stay out of pain. What are the benefits to you of eating gluten?  Your test could be a false negative but the good result is that you are doing better on gluten free.

 

Quote

Wheat is the most important staple crop in temperate zones and is in increasing demand in countries undergoing urbanization and industrialization....Starch from wheat and other cereal grains is the predominant source of human dietary carbohydrate... in wheat, fructans and raffinose are the major components of a group of ... carbohydrates which have been termed FODMAPs... It has been suggested that a low FODMAP diet improves the management of irritable bowel syndrome (IBS) and inflammatory bowel disease (Crohn's disease and ulcerative colitis), by reducing fermentation in the colon    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4998136/

 

Edited July 24, 2022 by Wheatwacked

[trents]

Welcome to he forum Gillianannpansan.

Do you need an official diagnosis of celiac disease for some reason? Dairy intolerance is very common among people with celiac disease. Sounds like you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity) along with dairy intolerance. Either way, the solution is the same. Avoid gluten and dairy.

Edited July 24, 2022 by trents

[knitty kitty]

@Gillianannpansan,

Welcome to the forum!

Our bodies make antibodies against gluten (and casein the protein in dairy) as long as we are consuming it.  Where we stop consuming gluten, our bodies stop making the antibodies.  

So having a blood test for gluten antibodies after you stopped eating gluten will more than likely be negative.

You could do a Gluten Challenge and eat gluten (and dairy) again for six to eight weeks so your body will make enough antibodies to show up in a blood test.   An unpleasant option.  

Another alternative is to have genetic testing done to see if you have any genes for Celiac.  No gluten challenge needed.  Some doctors will diagnose Celiac based on positive genetic markers and improvement on a gluten free and dairy free diet.  This is how I was diagnosed.  

Hope this helps!

[Gillianannpansan]

Dear Knitty Kitty 

I really appreciate you taking the time to try to help me.   Thank you.   I am very grateful.

[Gillianannpansan]

14 hours ago, trents said:

Welcome to he forum Gillianannpansan.

Do you need an official diagnosis of celiac disease for some reason? Dairy intolerance is very common among people with celiac disease. Sounds like you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity) along with dairy intolerance. Either way, the solution is the same. Avoid gluten and dairy.

The Dr. said he does not believe it is celiac because my iron levels are high.  I tend to think that it is more likely to be gluten sensitivity.   Is there any way that I can get diagnosed?   Thank you for replying.  I am very grateful.

[trents]

There are no diagnostic tools for NCGS. Celiac disease must first be ruled out. As you know, we do have diagnostic tools for celiac disease.

[Gillianannpansan]

1 hour ago, trents said:

There are no diagnostic tools for NCGS. Celiac disease must first be ruled out. As you know, we do have diagnostic tools for celiac disease.

Thank you Trent.   Much appreciated.

[knitty kitty]

23 hours ago, Gillianannpansan said:

The Dr. said he does not believe it is celiac because my iron levels are high.  I tend to think that it is more likely to be gluten sensitivity.   Is there any way that I can get diagnosed?   Thank you for replying.  I am very grateful.

The high iron levels could be connected to hemachromatosis.  Perhaps discuss this possibility with your doctor.

Here's an article...

Hope this helps.  

[Gillianannpansan]

26 minutes ago, knitty kitty said:

The high iron levels could be connected to hemachromatosis.  Perhaps discuss this possibility with your doctor.

Here's an article...

Hope this helps.  

Thank you.   It is indeed a very interesting article.