Am I Celiac Or What?!

[KatieTattie]

Hi all! Before I start I'll just say what a great supportive site this is!

I'll try and make my history as short as I can but as I'm sure you've all experienced I've been ill for a long time with no conclusive diagnosis!

I basically want to know what you all think about my medical history and whether you think I may be celiac.

Stomach, bowel pains, cramps only after eating when a child (started about 8 years old).

As a teenager the same pain and cramping after meals but massive weight loss/fatigue/depression. Dr diagnosed IBS without any tests being performed.

When at hit around 22 things got a lot worse, for about 18 months I was in so much pain with stomach cramps, loose bowels, weight loss, fatigue. I went to a GI who ordered lots of bloods (which included celiac) all came back negative. He ordered a colonoscopy which was incredibly painful (I consider myself pretty good with pain after my horrible bowel cramps)all looked normal but biopsy showed microscopic colitis. I asked what this meant and he said it was probably from an infection and that it could not be autoimmune crohns/UC. So again IBS was diagnosed.

Fast forward to the present, I am now 29 and had a baby 6 months ago. About 8 weeks after the birth the old stomach pains returned, it felt like my insides were on fire! I thought OMG here we go again another 'IBS' episode! Thinks got worse though, I'll list my symptoms:

Stomach pains

Loose bowels/cramps (worse than childbirth with no drugs which I did!)

Back pain

Head aches

Face swelled up (couldn't see through one eye swelling was that bad!)

Heat rash on joints

itchy skin

Joint and muscle pain

Eye pain

I lost 35lb in 8 weeks

Heart palpitations

Extreme fatigue

Anyway I went to numerous drs and had lots of bloods/ultra sounds everything negative apart from thyroid function. My thyroid was overactive but thyroid antibodies came back normal. Endo said it was just unfortunate and I probably had a virus which through my thyroid out of balance and it would 'sort itself out' Guess what 4 months later it hasn't!

Back to the endo I went and he did more tests, my adrenal function test came back borderline as did my acth level.

ANYWAY! heres my question: I was told by a nurse over the phone that my IGA antibodies have come back at 3.8 (ref range 0.8-2.8) she said she doesn't know what that means and that the endo with see me in the new year!! I've searched the net and celiac seems to keep coming up. What do you guys think?

I have gone gluten free for 3 days now and think I actually feel a bit better, no loose bowels at all but still in a bit of pain. I'm due to see an Immunologist in 2 days and would be really grateful for your wisdom so I can go armed with information and questions for him.

Please help me figure this mess out! I'm in such a state and being a new mum it has been a living hell trying to find out whats wrong with me!

Thanks you

Katie x

[Rick-O-Shay]

Hello,

I am new to all this myself. I have similar issues. My stomach pain is constant, I feel full early, and usually nauseous after eating. I have had a bit of weight loss and just plain feel lousy. All the dr's say the same thing... IBS with GERD... They tell me to take prilosec for life.

Being new to this myself I will just say that I have read that blood tests for gluten intolerance/sensitivity are not very accurate. My attitue for myself has been, why bother paying more money to go to the doctor and get expensive tests only to have them tell me to eliminate gluten anyway. I am just going gluten and dairy free to see if I feel better. If I do, I'll just stick with it. In fact, I probably should anyway, as gluten isn't good for you anyway.

Like I keep telling myself, this will take time. I have only been off gluten for 3 days. I think I feel a smidge better... but give it a try and some time would be my recommendation.

I hope this helps.

[Metoo]

I can tell you that I felt better after 4 days of being gluten free...but by week 3 of being gluten free I felt better than I have in a LONG time!

My issue was stomach pain, low vitamin D, exhaustion, and foggy brain feeling. By week 3 I felt full for the first time...NO pain! And everything just seems so much clearer, I am able to stay up past 9pm without feeling like I am going to pass out with exhaustion the next day!

I tested negative from the celiac blood test, but had a positive IgE blood test for gluten, negative on an allergy skin test though.

From the sounds of it...I am no expert it sounds like you might have a gluten problem, and your test sounds like it could be positive.

[ravenwoodglass]

If your blood test was positive you do need the diet. However if you are going to be referred to a GI for a scope you can not go gluten free until that is done. If you are going to the endo go back on gluten today and then the day the biopsies are taken go gluten free.

[KatieTattie]

Thanks for your post guys, I don't like to think that others are going through what I am but its comforting to know that there are people to share this stuff with.

I'm in the UK and the NHS seems to be falling apart at the moment, its been a nightmare trying to get to see specialists and get tests performed! I even decided to go private which has drained me of my savings

[KatieTattie]

Thanks for your post ravenwoodglass. I have not seen my consultant yet just had the results told over the phone by a nurse who had no clue what they meant just that the IGA was out of the reference range- 3.8 (0.8-2.8)Do you know whether this is a positive result for celiac?

I didn't even know he was doing these tests, he just said he was going to test some antibodies to see what was making me so ill. Does this mean I'm positive for celiac then? I seem to fit the profile perfectly and it would all make sense.thanks x

[Newsgirl]

HI there,

Can I just tell you how supportive this forum is and how sweet you all seem? As someone newly grappling with all of this stuff, it is a huge relief to know I'm certainly not going it alone!

Anyway, question for the experts: After months of horrible gut issues, I finally went to the doctor thinking I had an ulcer and he ran a litany of blood work (included below). He followed up by emailing me and saying that the celiac panel "strongly suggested" a wheat allergy or celiac sprue. Indicated that a gluten-free diet likely would alleviate the symptoms. I did immediately and immediately began feeling better. Now, a GI doc that I spoke with today (for a reflux issue that has since resolved with the gluten-free diet) made it sound like my lab tests only slightly indicated celiac and suggested either DNA testing (which I said I'd do) or biopsy (which I don't want to do since going back on gluten seems unnecessarily horrific). She said she wanted to do further testing because going gluten-free for life is hard and she wants to be sure that I really have it and that I get the proper nutrients if I do (I kinda liked this concern). Has anyone else done the DNA testing and gotten reliable results? And could someone help me figure out the test and what it means? Thanks so much for any assistance!!

TISSUE TRANSGLUTAMINASE IgG: 0.41

<0.90 -

[Skylark]

Thanks for your post ravenwoodglass. I have not seen my consultant yet just had the results told over the phone by a nurse who had no clue what they meant just that the IGA was out of the reference range- 3.8 (0.8-2.8)Do you know whether this is a positive result for celiac?

What type of IgA? It should be anti-something. Anti-EMA or anti-DGP would indicate celiac. Anti-TTG can also be positive in Crohn's or microscopic colitis so you would need more testing.

Sorry to tell you this, but you need to go back on gluten. Your doctor may want to run other tests or do an endoscopy with a biopsy and the testing doesn't work gluten-free.

[Skylark]

HI there,

Can I just tell you how supportive this forum is and how sweet you all seem? As someone newly grappling with all of this stuff, it is a huge relief to know I'm certainly not going it alone!

Anyway, question for the experts: After months of horrible gut issues, I finally went to the doctor thinking I had an ulcer and he ran a litany of blood work (included below). He followed up by emailing me and saying that the celiac panel "strongly suggested" a wheat allergy or celiac sprue. Indicated that a gluten-free diet likely would alleviate the symptoms. I did immediately and immediately began feeling better. Now, a GI doc that I spoke with today (for a reflux issue that has since resolved with the gluten-free diet) made it sound like my lab tests only slightly indicated celiac and suggested either DNA testing (which I said I'd do) or biopsy (which I don't want to do since going back on gluten seems unnecessarily horrific). She said she wanted to do further testing because going gluten-free for life is hard and she wants to be sure that I really have it and that I get the proper nutrients if I do (I kinda liked this concern). Has anyone else done the DNA testing and gotten reliable results? And could someone help me figure out the test and what it means? Thanks so much for any assistance!!

TISSUE TRANSGLUTAMINASE IgG: 0.41

<0.90 - Index

Tissue transglutaminase IgA: 0.21

<0.90 - Index

Gliadin IgA: <3

seefn - U/mL

Gliadin IgG: 24

seefn - U/mL

Hi there and welcome. In the future, when you want to ask your own question, it's better to start a new topic. It gets really confusing trying to talk about two sets of labs in one conversation and a lot of people will miss that you're even trying to ask something.

As your Dr. said, your results are equivocal. Sometimes the anti-gliadin IgG indicates only gluten intolerance rather than celiac with the autoimmunity. Other times the biopsy shows celiac. Either way, between feeling better and the antibodies you clearly have issues with eating wheat. The diet does NOT have any nutritional issues as long as you replace wheat with healthy foods like brown rice or quinoa. If you eat a bunch of super-starchy gluten-free processed foods, the diet is probably nutritionally worse.

DNA testing is NOT diagnostic at all. 30% of the US population has a so-called celiac gene. Even worse, some celiacs don't have the genes and get told they can eat gluten - they have a hard time getting taken seriously. At the best, you'd end up with some % chance you're celiac as a result. (Maybe 10% or 5% with high-risk genes.)

You would need an endoscopy with biopsy if you want to be sure about celiac disease and you need to go back to a full gluten diet to get accurate results. If you've been of gluten for a few months, you need to wait three months on a full gluten diet before you schedule a biopsy.

[KatieTattie]

What type of IgA? It should be anti-something. Anti-EMA or anti-DGP would indicate celiac. Anti-TTG can also be positive in Crohn's or microscopic colitis so you would need more testing.

Sorry to tell you this, but you need to go back on gluten. Your doctor may want to run other tests or do an endoscopy with a biopsy and the testing doesn't work gluten-free.

Thanks for that skylark. I really struggling to get copies of the results as the dr secretary says she wont release them before the dr has spoken to me which will be in a months time due to NHS waiting lists grrrr! I am due to see an immunologist on thursday and he should be able to access the results for me. Do you know whether an immunologist would be the best person to be able to figure this mess out for me other than a GI? The GI I saw was not interested after the colonoscopy I had which did show slight microscopic colitis but he just said it was probably a virus I'd contracted and would never come back. So he just labelled me with IBS again! Many thanks

[Skylark]

An immunologist should be able to make sense of the results, although he won't be able to move forward with an endoscopy and biopsy. It's likely you had positive TTG because that's the most common celiac screen. Since you had the microscopic colitis on biopsy, you will need celiac-specific tests to differentiate between autoimmune colitis/Crohn's and celiac.

Be ready to ask the immunologist to order anti-EMA and/or anti-deamidated gliadin if it does turn out you only had TTG. Those tests are more specific for celiac and can help a GI move forward. Good luck!

[KatieTattie]

An immunologist should be able to make sense of the results, although he won't be able to move forward with an endoscopy and biopsy. It's likely you had positive TTG because that's the most common celiac screen. Since you had the microscopic colitis on biopsy, you will need celiac-specific tests to differentiate between autoimmune colitis/Crohn's and celiac.

Be ready to ask the immunologist to order anti-EMA and/or anti-deamidated gliadin if it does turn out you only had TTG. Those tests are more specific for celiac and can help a GI move forward. Good luck!

Thanks for that its a great help I will mention it to him tomorrow and post my results on here. Thanks again x

[KatieTattie]

I can't even express how angry I am after seeing this immunologist! I really am at breaking point with doctors! Can anyone figure out these recent blood results for me please?

IgG- 11.94 (6.0-16.0)

IgA- 3.4 (0.8-2.8)

IgM - 1.05 (0.5-1.9)

ANA Anti nuclear Antibody- Hep 2 Positive homogeneous

I went to see this immunologist thinking that my endo might have ordered me celiac tests and it look like he hasn't done the relevant ones needed. So I'm no closer to a diagnosis and have no clue as to whats wrong with me again!

The dr said not to worry about the out of range results as 'some people are like that'! when I said well I don't feel well so obviously theres something wrong he just smirked at me and said 'there's nothing wrong with you, you might have had a virus'

Anyone any ideas?

Have I even had the right tests for celiac? or should I just go back on the bread and forget about all of this! sorry just so wound up about all this!

[Skylark]

Sorry but there are no celiac tests in that list. As your doctor says, the high total IgA may just be that you had a virus. It can also indicate autoimmunity, but total IgA doesn't give any indication of what sort of autoimmunity you have.

ANA is an autoimmune antibody. A low amount of ANA shows up in a fair number of healthy people, but it is also associated with autoimmune diseases like lupus, scleroderma, Sjogren's and rheumatoid arthritis. It's not usually positive in celiac, but it can be positive with autoimmune thyroid disease. The homogenous pattern is most often seen with lupus. There should be a titer on your lab slip, like 1:80 or 1:160 that shows how strong the reaction is. The smaller the fraction, the stronger the reaction is. It is probably worth looking up lupus symptoms and seeing if they match yours. Don't panic about this test, though. ANA alone does NOT indicate that you have lupus.

The specialist who might be able to sort things out is a rheumatologist, if you can get in to see one.

As far as celiac, we've seen it cause all sorts of things and all your GI symptoms sure suggest that gluten could be a problem. The trouble with going gluten-free right now is that you have to be eating wheat for celiac testing to work. If you stay gluten-free you give up your chance at celiac testing.