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Newbie- Seeing Gi About Celiac Disease


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#1 jennlea

 
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Posted 05 February 2013 - 05:15 PM

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.
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#2 Lisa

 
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Posted 05 February 2013 - 05:44 PM

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.
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Lisa

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"Not all who wander are lost" - JRR Tolkien

#3 Marilyn R

 
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Posted 05 February 2013 - 05:53 PM

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!
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 mushroom

 
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Posted 05 February 2013 - 06:21 PM

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. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
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Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 jennlea

 
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Posted 05 February 2013 - 06:51 PM

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 :)
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#6 Lisa

 
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Posted 05 February 2013 - 07:14 PM

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

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien




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