Can’t diagnose problem.

[Mdevz]

Hi all, I’ve come here seeking some answers. I have tried desperately with my doctors to get some but blood tests always come back fine.

I know I have an issue with gluten and dairy. I get extremely tired when I have anything dairy and if it’s ice cream I get stomach cramps and some sort of IBS and wheat makes me breathless, fatigued and arms and joints ache a lot. 
 

if I stick to a strict diet I’m perfectly fine, we’ll more than fine - I started eliminating foods that contained the above a while back now, but it does get difficult to stick to all the time. 
 

what tests do I need to have in order to determine what it actually is? 
 

how have you been diagnosed and do you get the same symptoms? I find I get it from cornflour and sometimes even gluten free stuff gives me issues too. 

[trents]

Welcome to the forum, Mdevz!

Do you know what blood tests have been run by your doctors? There are specific blood test that need to be run in order to diagnose celiac disease. It cannot be diagnosed by running a CBC or CMP such as your doctor would commonly order for an annual physical to check for different kinds of blood cells, iron levels, sugar, liver and kidney function.

Here is a primer for celiac blood tests: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

If you have an issue with gluten but do not have celiac disease you may instead have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there are currently no diagnostic tests. Celiac Disease must first be ruled out. NCGS is 10x more common than celiac disease.

Having said all that, you need to be aware that if you have bee striving to eat gluten free, and been mostly successful, any testing for celiac disease will be invalidated. Celiac disease is defined by inflammation in the small bowel lining that slowly destroys the villi that make up that lining. The consumption of gluten triggers an autoimmune reaction that generates the inflammation. The celiac disease tests that I referred to above are designed to detect specific antibodies produced by the inflammation. When you eliminate or severely cut back on gluten your eliminate the inflammation it causes and, therefore, eliminates the production of celiac antibodies. That may be the reason your blood tests have been negative, if in fact you have actually had celiac antibody testing done as part of your blood work.

So, if you want valid celiac antibody testing done, you would need to go back to eating regular amounts of gluten for 6-8 weeks leading up to the blood draw. "Regular amounts of gluten" is defined by the Mayo Clinic as the daily consumption of two slices of wheat bread or the gluten equivalent.

[Scott Adams]

For most people getting tested is the best path to stay on a gluten-free diet, however, if you already know that you can't eat gluten, then going through a gluten challenge may not make sense for you, especially when you consider that the test doesn't work for non-celiac gluten sensitivity. If your celiac disease screened ended up with negative test results you would likely be in the NCGS group and still need to be gluten-free.

[Mdevz]

Thank you for a swift and detailed response. I did kind of come to the conclusion that I would need to probably eat wheat for a period to be diagnosed properly - doctors here won’t tell you that mind. 
 

I can’t figure out why I get the same with dairy though? Is it all linked? I mean I literally can’t even eat gluten free stuff half the time, effects aren’t as severe but still get breathless and fatigue to a small degree. 
 

it’s hard work, I’m a 16st male aged 34, my build is muscular. I struggle to get the amount of nutrients and protein I need because of this - my body literally feels like it’s wasting away some days, craves protein, I work a physically demanding job, so it’s like I have to eat every 2 hours otherwise I get shaky and light headed 😅 

I feel like I’m falling apart honestly.. 

[trents]

2 hours ago, Mdevz said:

Thank you for a swift and detailed response. I did kind of come to the conclusion that I would need to probably eat wheat for a period to be diagnosed properly - doctors here won’t tell you that mind. 
 

I can’t figure out why I get the same with dairy though? Is it all linked? I mean I literally can’t even eat gluten free stuff half the time, effects aren’t as severe but still get breathless and fatigue to a small degree. 
 

it’s hard work, I’m a 16st male aged 34, my build is muscular. I struggle to get the amount of nutrients and protein I need because of this - my body literally feels like it’s wasting away some days, craves protein, I work a physically demanding job, so it’s like I have to eat every 2 hours otherwise I get shaky and light headed 😅 

I feel like I’m falling apart honestly.. 

A high percentage of celiacs cannot tolerate dairy, either because of the lactose or the dairy protein casein. For those with casein intolerance, the deal is that the protein must be similar enough to gluten protein that it causes a similar autoimmune reaction. Those with lactose intolerance sometimes outgrow it after going gluten free for a significant period of time that allows healing of the gut villi. You might look into whey-based protein powders as whey is usually tolerated very well. Dairy contains both casein and whey. Just mix the whey in another liquid besides milk.

[ReginaR]

Hi another possibility, if you are African American your test results may be a false negative. There was a study that was done recently talking about how AA were not being diagnosed properly because their blood work was not showing high enough levels of inflammatory markers to then move on to an endoscopy diagnosis. I personally still had reactions after going gluten and dairy free and did a food sensitivity panel and found out I was highly sensitive to chicken and cane sugar which I was eating both almost daily. So I recommend a food sensitivity panel along with proper celiac testing. 

1 hour ago, trents said:

A high percentage of celiacs cannot tolerate dairy, either because of the lactose or the dairy protein casein. For those with casein intolerance, the deal is that the protein must be similar enough to gluten protein that it causes a similar autoimmune reaction. Those with lactose intolerance sometimes outgrow it after going gluten free for a significant period of time that allows healing of the gut villi. You might look into whey-based protein powders as whey is usually tolerated very well. Dairy contains both casein and whey. Just mix the whey in another liquid besides milk.

Yes, I had to go dairy free till my gut healed and now I can tolerate dairy but if I go overboard my gut is not happy with me. 

[trents]

The tTG-IGA test, which is the most common celiac disease test ordered by doctors, will miss 80% of African Americans who actually do have celiac disease.

[ReginaR]

16 minutes ago, trents said:

The tTG-IGA test, which is the most common celiac disease test ordered by doctors, will miss 80% of African Americans who actually do have celiac disease.

Yes that’s what the article I read said. So sad for all those that are misdiagnosed, knowing something is wrong and not getting the proper diagnosis. 

[Wheatwacked]

1 hour ago, ReginaR said:

Yes, I had to go dairy free till my gut healed and now I can tolerate dairy but if I go overboard my gut is not happy with me. 

Try 100% Pasture Fed milk. It has less omega 6, which causes inflamation.