• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newbie- Seeing Gi About Celiac Disease
0

6 posts in this topic

Recommended Posts

jennlea    0

Hi everyone!

I am new here and hoping to find lots of good info but wanted to get some insights on what I should be asking my GI during my 1st appointment that is in a few days. First a little history:

Over the past 2 years I have noticed annoying symptoms that have developed into making me feel really crummy every day. I gained a bunch of weight rapidly then couldn't lose that weight despite eating extremely healthy and working out for 6 months. I got more and more fatigued and am now to the point that everyday is a struggle because I am so extremely exhausted. I have a hard time focusing and feel like I am walking around in a fog. Sometimes it is incredibly frustrating to try and pull information out of my brain because it is like it doesn't want to work. My knees and ankles will ache pretty bad occasionally but not consistently. I will have diarrhea randomly one day but will be constipated the next. I have terrible and extremely foul gas that causes some pain and bloating. Sometimes my skin will randomly break out in a little itchy rash that drives me insane and every now and then my hands feel like they are asleep.

My family has a history of thyroid problems and I have several nodules on my thyroid that were biopsied 6 years ago but my thyroid was and has been functioning normal. A few months ago I got to the point where I couldn't take feeling like this any more and went back to my Endocrinologist insisting something was wrong with me. He did a lot of bloods test looking for thyroid diseases and did another biopsy but all those tests came back negative. Other blood tests he ordered showed that I have low B12 levels and a high amount of inflammation in my body. However, the blood tests he did trying to pin-point the inflammation all came back negative and so he has no answers yet. He scheduled me to see a GI to talk about Inflammatory Bowel Disease and Celiac Disease. I will also be seeing a Rheumatologist to see if she has an idea where the inflammation might be coming from.

I know something is going on in my body and it is frustrating to no end, but at least I am in the process of finding out what is causing me to feel so bad.

What are some things that I need to ask my GI about when it comes to celiac disease? I know nothing about it and have no one in my life who suffers from it but want to be prepared when I see the GI.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Lisa    457

Hi everyone!

I am new here and hoping to find lots of good info but wanted to get some insights on what I should be asking my GI during my 1st appointment that is in a few days. First a little history:

Over the past 2 years I have noticed annoying symptoms that have developed into making me feel really crummy every day. I gained a bunch of weight rapidly then couldn't lose that weight despite eating extremely healthy and working out for 6 months. I got more and more fatigued and am now to the point that everyday is a struggle because I am so extremely exhausted. I have a hard time focusing and feel like I am walking around in a fog. Sometimes it is incredibly frustrating to try and pull information out of my brain because it is like it doesn't want to work. My knees and ankles will ache pretty bad occasionally but not consistently. I will have diarrhea randomly one day but will be constipated the next. I have terrible and extremely foul gas that causes some pain and bloating. Sometimes my skin will randomly break out in a little itchy rash that drives me insane and every now and then my hands feel like they are asleep.

My family has a history of thyroid problems and I have several nodules on my thyroid that were biopsied 6 years ago but my thyroid was and has been functioning normal. A few months ago I got to the point where I couldn't take feeling like this any more and went back to my Endocrinologist insisting something was wrong with me. He did a lot of bloods test looking for thyroid diseases and did another biopsy but all those tests came back negative. Other blood tests he ordered showed that I have low B12 levels and a high amount of inflammation in my body. However, the blood tests he did trying to pin-point the inflammation all came back negative and so he has no answers yet. He scheduled me to see a GI to talk about Inflammatory Bowel Disease and Celiac Disease. I will also be seeing a Rheumatologist to see if she has an idea where the inflammation might be coming from.

I know something is going on in my body and it is frustrating to no end, but at least I am in the process of finding out what is causing me to feel so bad.

What are some things that I need to ask my GI about when it comes to celiac disease? I know nothing about it and have no one in my life who suffers from it but want to be prepared when I see the GI.

Hello and welcome!

This is the test (all of them) for Celiac Disease:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Let me stress, have your doctor order a FULL panel as listed above. Many doctors are not informed and the results can be incomplete, and therefore, non-definative. Continue to consume gluten until all your testing in complete.

Tell you doctor about your family history. It might be a piece of the puzzle.

Good luck and keep us informed.

Share this post


Link to post
Share on other sites
Marilyn R    239

Hi Jenn, and welcome to the forum.

I'm sorry you've had a rough run for a few years.

Your post made me think of a couple of things that might help you. Regarding family history, have your grandparents, aunts, uncles, cousins been diganosed with other autoimmune diseases? (Cancer, diabetes, M.S., Leukemia...or irritable bowel syndrome... there are more than 200 symptoms and sometimes family doesn't always mention the bad things.) Some people have no symptoms whatsoever but a crackjack dr. pulls a random blood draw and it turns out after biopsy that they have celiac disease.

I'd ask your gastro to order a full celiac panel on you, and to write "release results to patient" on it if you live in a state where the lab isn't allowed to release blood test results to patients.

There are some whizzes on the board that can interpret blood test results better that doctors.

The other thing to think about is soy. That's been associated with thyroid problems in medical literature , especially non fermented soy, like miso and soy sauce.

Good luck on your journey to better health! Yay you!

Share this post


Link to post
Share on other sites
mushroom    1,205

I agree with Lisa. :) And I would add, your symptoms sound very like celiac; not so much IBD, which is really a wastebasket diagnosis when they can't figure out what else it is.

Some thoughts about inflammation. Celiac disease is an autoimmune inflammatory disease. One of the first physical objective findings is inflammation in the duodenum/small intestine. It can also cause inflammation and pain in the joints which will often lead to a correct or incorrect diagnosis of rheumatoid arthritis. From your description of your joint pain I do not suspect full-blown arthritis is the case with you, but you should pursue with a rheumatologist just in case.

In my case I had very high inflammatory markers on sed. rate and CRP, but I tested negative for Rheumatoid Factor (RF). Nevertheless, I was progressively diagnosed (because my x-rays showed joint involvement) with polymyalgia rheumatica, then non-RF rheumatoid arthritis, and eventually psoriatic arthritis when the psoriasis "bloomed". PsA is often RF-negative. So I was never completely sure how much of my inflammation came from my arthritis and how much came from my presumed celiac, and I say presumed since I was never tested, having gone gluten free in an attempt to manage my arthritis inflammation - the disappearance of my GI symptoms was really just an added bonus at that point, my arthritis having become that bad. Many doctors (although not mine) recommend a gluten free diet for rheumatoid-type conditions. I have also eliminated the nightshade family (potatoes, tomatoes, eggplant, bell peppers mainly) from my diet since they are pro-inflammatory. I had low B12, low folate, low D; I also have hypothyroidism, but it is 'subclinical', i.e., just within the (now old) guidelines but the symptoms respond to treatment.

When your doctor tested your thyroid did he do the TPO ab test? Have you had any ANA testing?

Good luck with your GI appointment and let us know how it goes. :)

Share this post


Link to post
Share on other sites
jennlea    0

This is the test (all of them) for Celiac Disease:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Thank you!! I will make sure to take this list with me to the appointment.

Your post made me think of a couple of things that might help you. Regarding family history, have your grandparents, aunts, uncles, cousins been diganosed with other autoimmune diseases? (Cancer, diabetes, M.S., Leukemia...or irritable bowel syndrome... there are more than 200 symptoms and sometimes family doesn't always mention the bad things.) Some people have no symptoms whatsoever but a crackjack dr. pulls a random blood draw and it turns out after biopsy that they have celiac disease.

As far as I know of, none of my family has been diganosed with other autoimmune dieseses.

Some thoughts about inflammation. Celiac disease is an autoimmune inflammatory disease. One of the first physical objective findings is inflammation in the duodenum/small intestine. It can also cause inflammation and pain in the joints which will often lead to a correct or incorrect diagnosis of rheumatoid arthritis. From your description of your joint pain I do not suspect full-blown arthritis is the case with you, but you should pursue with a rheumatologist just in case.

In my case I had very high inflammatory markers on sed. rate and CRP, but I tested negative for Rheumatoid Factor (RF). Nevertheless, I was progressively diagnosed (because my x-rays showed joint involvement) with polymyalgia rheumatica, then non-RF rheumatoid arthritis, and eventually psoriatic arthritis when the psoriasis "bloomed". PsA is often RF-negative. So I was never completely sure how much of my inflammation came from my arthritis and how much came from my presumed celiac, and I say presumed since I was never tested, having gone gluten free in an attempt to manage my arthritis inflammation - the disappearance of my GI symptoms was really just an added bonus at that point, my arthritis having become that bad. Many doctors (although not mine) recommend a gluten free diet for rheumatoid-type conditions. I have also eliminated the nightshade family (potatoes, tomatoes, eggplant, bell peppers mainly) from my diet since they are pro-inflammatory. I had low B12, low folate, low D; I also have hypothyroidism, but it is 'subclinical', i.e., just within the (now old) guidelines but the symptoms respond to treatment.

When your doctor tested your thyroid did he do the TPO ab test? Have you had any ANA testing?

I didn't realize that Celiac disease was an inflammartory autoimmune disease...very interesting!

Both my sed. rate and CRP tests came back high and same as you, my RF tested negative. My TPO ab test was 17.3 with the standard range being <35 (according the my lab results) and the ANA was negative.

Thanks for all the information and thoughts! I am anxious and ready for my appointment to be here :)

Share this post


Link to post
Share on other sites
Ads by Google:


Lisa    457
^_^ I think it's great to have someone like Mushroom around, who knows her stuff. :)

Share this post


Link to post
Share on other sites

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

0

  • Forum Statistics

    • Total Topics
      107,865
    • Total Posts
      938,386
  • Member Statistics

    • Total Members
      65,763
    • Most Online
      3,093

    Newest Member
    Kirsty Fitzpatrick
    Joined
  • Popular Now

  • Topics

  • Posts

    • I can definately identify with this. I half-laughingly refer to myself as an 'elder orphan'.   I can't afford anything like a secret santa but would love the opportunity to exchange holiday cards with others here.  It is comforting in a way to realize that I am not the only person who is isolated but kind of sad to know that there are others in the same boat. When I talk to folks with large close extened families who endlessly complain about them I just want to slap them sometimes.
    • Yes IELs can be linked to other things. However, increase in IELs, loose stools, and a good response to a gluten free diet would point to celiac.  Celiac panels vary lab to lab and not all labs run all of the tests so you might want to post here after you get your results. My brother was negative to the labs run but they failed to run the DGP test in him (which I have tested positive on before). He is a biopsy confirmed celiac.  Thyroid issues can give you the runs, and lipase can indicate how well your pancreatic and gallbladder system is working, both can also cause tummy issues. Both issues are also common in celiacs as mentioned by others. Sounds like you have a great doc.  Last, my initial last biopsy was read by a hospital pathologist to be increase in IEL. The slides were read by a celiac specialist at that same hospital after they were re-cut (don't ask, I have no idea) and read Marsh 2-3A damage with areas of normal villi.   
    • Hi Benjamin and welcome You've found a good site. Everyone above has given you good advice I just wanted to reinforce this point from Ravenwoodglass: Some people (like me), test negative for celiac but still have a problem with gluten. This is called Non Celiac Gluten Sensitivity and is not a well known or understood condition. Suffice to say if you do test negative, you shouldn't assume that gluten is fine for you, it may well not be. Best of luck! Matt
    • You're welcome I don't think any doctor should be too reluctant to request a blood test if you set things out for them in the right way. You have symptoms consistent with celiac/gluten sensitivity, you have anecdotal evidence (your positive reaction to going gluten free). So you have a good case.  If and when you get some tests scheduled you will have to go back on gluten. This can be rough. It helped me to come on here and document how I was feeling. Support from here helped me get through the challenge period. So do come back on if your doing the challenge.
    • I agree that you should keep eating gluten and get tested if you can.  The reason for the increase in symptoms after being gluten free is the antibodies flaring in response to you injesting what your body doesn't want you to consuming.  Your body is letting you know in no uncertain terms that gluten is not something it wants.  You don't have to consume a lot of gluten for testing. A couple slices of bread worth is enough.  There is a chance with most of your issues sounding like they are neuro related for a false negative. After testing you should IMHO go back to being strictly gluten free no matter what the results. Keep in mind that many doctors consider celiac to be a solely GI problem and won't test if you don't have gastro issues.  Sounds like your body is giving you the answer but a formal diagnosis can be helpful with family members and freinds taking the condition as seriously as you need to take it.
  • Upcoming Events