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Getting diagnosed just a few questions!


Sebastian95

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Sebastian95 Rookie

Hello all!

I have dealt with stomach issues for about the past almost 8 years. About to weeks ago I went to my doctor and bad blood tests for literally everything possible done they took 8 tubes of blood.

So I got a call from the medical assistant a few days ago that my blood results (which i have not seen yet nor has my doctor until this week) supposedly are showing strong results that indicate celiac disease. And that I have an infection somewhere in my body i don’t know if that’s connected to the celiac at all?

but for years I’ve had symptoms of, diarrhea, fatigue, like brain fog/feeling heavy, as well as muscle weakness sometimes. Are these common with celiac? For reference im 27 never had any issues and don’t take any medications. 
 

I look forward to any input and help on this if possible if anything to at least calm my nerves. I appreciate any help and information possible. Thank you!


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trents Grand Master

Welcome to the forum, Sebastian!

Essentially all of your symptoms are commonly found in the celiac community.

The infection is probably not related to celiac disease, at least not directly.

Many or most of the symptoms you describe are likely related to nutritional deficiencies which goes hand in hand with celiac disease. celiac disease is an autoimmune disorder defined by damage to the villi that line the small bowel, which is where essentially all of the nutritional elements of what we eat are absorbed. When someone with celiac disease consumes gluten, the immune system interprets it as an invader and generates inflammation in order to deal with it. However, when this inflammation is repeated meal after meal it flattens the little finger-like projections which make up the villi. This reduces the surface area for absorbing nutrients and over time results in nutritional deficiencies, even though the individual may be eating well.

There are some very specific blood tests used to diagnose celiac disease. These tests are designed to detect inflammation markers from the ongoing damage to the SB villi. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ These tests are not a part of the standard CBC/CMP bloodwork ordered for most other things in a general checkup.

Let us know when you get the results of your bloodwork and if there were celiac antibody tests ordered we encourage you to post them online along with the reference ranges for each test as to what is negative/positive. Different labs use different values for the reference ranges so including that info is important if you want our input on the results.

Your doctor may want to order and endoscopy with biopsy of the small bowel lining to confirm the blood test results so it's very important to continue eating regular amounts of gluten until that procedure is complete, should your doctor want this. Going gluten free preliminary to testing will invalidate the results as it will allow healing and the inflammation antibody markers to subside.

Sebastian95 Rookie
43 minutes ago, trents said:

Welcome to the forum, Sebastian!

Essentially all of your symptoms are commonly found in the celiac community.

The infection is probably not related to celiac disease, at least not directly.

Many or most of the symptoms you describe are likely related to nutritional deficiencies which goes hand in hand with celiac disease. celiac disease is an autoimmune disorder defined by damage to the villi that line the small bowel, which is where essentially all of the nutritional elements of what we eat are absorbed. When someone with celiac disease consumes gluten, the immune system interprets it as an invader and generates inflammation in order to deal with it. However, when this inflammation is repeated meal after meal it flattens the little finger-like projections which make up the villi. This reduces the surface area for absorbing nutrients and over time results in nutritional deficiencies, even though the individual may be eating well.

There are some very specific blood tests used to diagnose celiac disease. These tests are designed to detect inflammation markers from the ongoing damage to the SB villi. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ These tests are not a part of the standard CBC/CMP bloodwork ordered for most other things in a general checkup.

Let us know when you get the results of your bloodwork and if there were celiac antibody tests ordered we encourage you to post them online along with the reference ranges for each test as to what is negative/positive. Different labs use different values for the reference ranges so including that info is important if you want our input on the results.

Your doctor may want to order and endoscopy with biopsy of the small bowel lining to confirm the blood test results so it's very important to continue eating regular amounts of gluten until that procedure is complete, should your doctor want this. Going gluten free preliminary to testing will invalidate the results as it will allow healing and the inflammation antibody markers to subside.

Happy to be here!

And awesome thank you for all the valuable info, it’s greatly appreciated! This will all be a big help

Scott Adams Grand Master

After all testing is done and your doctor recommends that you go gluten-free, this article may be helpful:

 

Jays911 Contributor
On 7/30/2022 at 7:05 PM, Sebastian95 said:

Hello all!

I have dealt with stomach issues for about the past almost 8 years. About to weeks ago I went to my doctor and bad blood tests for literally everything possible done they took 8 tubes of blood.

So I got a call from the medical assistant a few days ago that my blood results (which i have not seen yet nor has my doctor until this week) supposedly are showing strong results that indicate celiac disease. And that I have an infection somewhere in my body i don’t know if that’s connected to the celiac at all?

but for years I’ve had symptoms of, diarrhea, fatigue, like brain fog/feeling heavy, as well as muscle weakness sometimes. Are these common with celiac? For reference im 27 never had any issues and don’t take any medications. 
 

I look forward to any input and help on this if possible if anything to at least calm my nerves. I appreciate any help and information possible. Thank you!

You have typical symptoms. But there are so many, over 300. Brain fog and fatigue were two of mine. Get tested. Hang in there. 

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    • knitty kitty
      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
    • trents
      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
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