Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Getting diagnosed just a few questions!

Sebastian95
 Share

Recommended Posts

Sebastian95 Rookie
Sebastian95
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

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
Sebastian95
Posted
  • Author
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
Scott Adams
Posted

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

 

Jays911 Contributor
Jays911
Posted
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. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    3. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
    4. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal.
    5. Theresa2407
      - Theresa2407 replied to chrish42's topic in Doctors
      4

      Doctors and Celiac.com

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one. We have held yearly conferences with continued education classes. We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott. In those many years we may have had 2 doctors attend. We sent them information, with no response. I talked to...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,255
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.