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ByeRye

Testing tomorrow - what exactly do I ask for?

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Hello everyone. 

In a nutshell: I'm being tested tomorrow and I'd like to know exactly what to ask for. I know the phrase "full celiac panel", but is there more technical talk I can use to ensure the doc tests thoroughly?

long story: (I'm typing on a phone, so won't get into too much detail!)

I'm 40. I've had stomach and digestive issues since I was a young teenager. Bloating after meals, constant constipation. Over the counter meds for the C never helped. Once I would finally be able to go there would be loose stools, but not exact D. 

Ive had chronic anemia since I was a teenager. It was blamed in heavy periods, but even when those would level out a bit I could never really get much footing with my iron counts. A few years ago my iron level dropped to 6, ferritin was 2.  Hair loss, fatigue, depression, anxiety, are all the constant backdrop to my life - which has often  been attributed to anemia. Oh, vitamin D is also always low despite being outside quite a bit and taking supplements fir years and years.

Over recent years I've restricted  my diet a lot. Never suspecting Celiac. I just came to know that eating "light" felt better. I've subbed corn for flour products, cut out crackers, etc. still far from gluten-free, but it was obvious that cutting back in bready things and pasta and the like agreed with me.

i don't know how it struck me recently, but a lightening bolt hit me that the one thing  all my "bad foods" had in common was gluten. So on a lark I cut it out. Three days later my belly was flatter than I can ever remember it being. I was also comfortable (though still constipated), I felt light and cheerful and my mind felt very sharp. I had abundant energy and felt worlds better than I can ever remember feeling. Honestly, I was FLOORED. This went on for a few more days of me feeling on top of the world for the first time in my whole adult life. 

Only then did I read up on what all the symptoms of celiac can be and it was practically autobiographical. :( 

So I see you have to be in a gluteny diet for testing. At this point I was gluten-free for only a week. I made an appointment and requested to be tested.  That appointment is tomorrow. I've been back on the gluten train since Tuesday evening and I'm miserable. I've probably been overdoing it, having about 3-4 servings a day. I look pregnant and feel ready to pop.

Do you all think the testing should be fine despite that one week of gluten-free? The doc thought it would be okay, as long as I started eating it again in the meantime (3 days).

Ive always assumed I had IBS, so this new possibility is overwhelming. I imagine that I'll be giving up gluten after testing either way bc the relief I felt during my tiny trial was emmense.

Something else gnawing at me is the symptom of pale yellowish stool. While that is not something I experience, one of my children does. 

 

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Oh! Another surprising symptom I have in spades is tingling hands and feet. I had no idea that wasn't normal. 

I self diagnosed myself with Reynauld's Syndrome two winters ago. That's a lot better since moving to CA, though things like the walk-in cooler at Costco are miserable experiences. Lol

My hands always feel ice cold, even in summer.  I threaten my kids with "behave or I'll put my hands on you!" when they misbehave, which means my ice hands will touch their nice warm backs.  They really hate that. ;) 

 

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Sorry, another post. With a question. While I've almost convinced myself that I do have celiac, the main thing making me think "naw, there's no way", is that I've been dealing with this stuff since I was about 14. Wouldn't I be dead from the terrible things that can happen by frying my guts all these years? 

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43 minutes ago, ByeRye said:

Hello everyone. 

In a nutshell: I'm being tested tomorrow and I'd like to know exactly what to ask for. I know the phrase "full celiac panel", but is there more technical talk I can use to ensure the doc tests thoroughly?

long story: (I'm typing on a phone, so won't get into too much detail!)

I'm 40. I've had stomach and digestive issues since I was a young teenager. Bloating after meals, constant constipation. Over the counter meds for the C never helped. Once I would finally be able to go there would be loose stools, but not exact D. 

Ive had chronic anemia since I was a teenager. It was blamed in heavy periods, but even when those would level out a bit I could never really get much footing with my iron counts. A few years ago my iron level dropped to 6, ferritin was 2.  Hair loss, fatigue, depression, anxiety, are all the constant backdrop to my life - which has often  been attributed to anemia. Oh, vitamin D is also always low despite being outside quite a bit and taking supplements fir years and years.

Over recent years I've restricted  my diet a lot. Never suspecting Celiac. I just came to know that eating "light" felt better. I've subbed corn for flour products, cut out crackers, etc. still far from gluten-free, but it was obvious that cutting back in bready things and pasta and the like agreed with me.

i don't know how it struck me recently, but a lightening bolt hit me that the one thing  all my "bad foods" had in common was gluten. So on a lark I cut it out. Three days later my belly was flatter than I can ever remember it being. I was also comfortable (though still constipated), I felt light and cheerful and my mind felt very sharp. I had abundant energy and felt worlds better than I can ever remember feeling. Honestly, I was FLOORED. This went on for a few more days of me feeling on top of the world for the first time in my whole adult life. 

Only then did I read up on what all the symptoms of celiac can be and it was practically autobiographical. :( 

So I see you have to be in a gluteny diet for testing. At this point I was gluten-free for only a week. I made an appointment and requested to be tested.  That appointment is tomorrow. I've been back on the gluten train since Tuesday evening and I'm miserable. I've probably been overdoing it, having about 3-4 servings a day. I look pregnant and feel ready to pop.

Do you all think the testing should be fine despite that one week of gluten-free? The doc thought it would be okay, as long as I started eating it again in the meantime (3 days).

Ive always assumed I had IBS, so this new possibility is overwhelming. I imagine that I'll be giving up gluten after testing either way bc the relief I felt during my tiny trial was emmense.

Something else gnawing at me is the symptom of pale yellowish stool. While that is not something I experience, one of my children does. 

 

Here are the tests:

http://www.cureceliacdisease.org/screening/

An IgA deficiency test should be ordered too.  This will determine if any of the IgA celiac tests actually work.  

Yes....this is genetic, so kids (all first degree relatives)  would need to be tested.  

I would think one week off would be okay, but I am not a doctor.  I would be more concerned with being gluten light prior to your week off.  I am not sure how light you were.  

Edited by cyclinglady

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33 minutes ago, ByeRye said:

Sorry, another post. With a question. While I've almost convinced myself that I do have celiac, the main thing making me think "naw, there's no way", is that I've been dealing with this stuff since I was about 14. Wouldn't I be dead from the terrible things that can happen by frying my guts all these years? 

Most celiacs have been ill for years or decades before being diagnosed.  Amazingly, the body can adapt and survive.  Just think of the Holocast survivors.  

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39 minutes ago, ByeRye said:

Oh! Another surprising symptom I have in spades is tingling hands and feet. I had no idea that wasn't normal. 

I self diagnosed myself with Reynauld's Syndrome two winters ago. That's a lot better since moving to CA, though things like the walk-in cooler at Costco are miserable experiences. Lol

My hands always feel ice cold, even in summer.  I threaten my kids with "behave or I'll put my hands on you!" when they misbehave, which means my ice hands will touch their nice warm backs.  They really hate that. ;) 

 

Autoimmune issues tend to run in packs.  I have a few myself!  My kid has Reynalds.  We are in CA too and she wears wool socks to school all year long!   Her blue fingers freak out her classmates.  No cure and it is not documented in her medical chart.  

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2 hours ago, cyclinglady said:

 

Here are the tests:

http://www.cureceliacdisease.org/screening/

An IgA deficiency test should be ordered too.  This will determine if any of the IgA celiac tests actually work.  

Yes....this is genetic, so kids (all first degree relatives)  would need to be tested.  

I would think one week off would be okay, but I am not a doctor.  I would be more concerned with being gluten light prior to your week off.  I am not sure how light you were.  

Thank you for the link to information! I am printing it out and making notes in the margins. I am walking into this appointment with ample information in hand, because i have a tendancy to blank and not remember everything and then spend days after kicking myself for one thing or another.

The appointment, btw, was moved up to today. I'm suddenly a nervous wreck.

you wrote "I would think one week off would be okay, but I am not a doctor.  I would be more concerned with being gluten light prior to your week off.  I am not sure how light you were."  
-- YIKES. I hadn't considered that. After a lot of thinking on it, I don't think I was too light though. I am a calorie counter, so I actually have everything I've ever eaten since January of 2011 documented. I looked through and while there would be a day or two a week that I'd have a zero gluten day (tons of CC though, I am sure), most days I would have one thing. My rule of thumb has been this knowledge that if I had toast at breakfast I'd be "okay", but I couldn't have a sandwich at lunch. If I knew I'd have pizza at dinner, then I would avoid breads leading up to it.  And I was not careful at all (to my knowledge, I had no reason to be) of all the hidden glutens in food. For example, I have steel cut oats for breakfast most mornings.  

However, the way I am responding to my gluten-filled days since making the appointment is extreme. Which my one gluteny thing a day I would bloat, but not be too uncomfortable (bloating was so normal to me I didn't know any different). But now that I've been having like 4 gluten things a day, I can barely function. I have been pregnant 4 times and I feel like I am overdue right now, full waddle, swayed back, arms clutching my lower back and all. So I'm not sure what my extreme reaction NOW says about my lesser reaction then.

Gah! Sorry for writing so much. This is what happens when I am a bundle of nerves.

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When my doctor ordered the celiac tests he also ordered a fasting glucose test. Why would that be? 

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1 hour ago, ByeRye said:

When my doctor ordered the celiac tests he also ordered a fasting glucose test. Why would that be? 

With diabetes (type 2) on the rise, it makes good sense.  On top of that, type 1 diabetes is autoimmune and is linked to celiac disease, but it is not common.    No worries.   Be glad your doctor is checking.  

 

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I don't have any risk factors for type 2. So I immediately feared he was suspecting type 1. I have quite a bit of tingling hands and arm going on. My BP is close to low. 

He said lab results  could take five days.  But the lab tech said they'd possibly be ready and uploaded tonight. 

Disappointed that he would not run a full panel. I had printed out the info from the link you posted and politely argued, but he kept repeating his line. I can't recall the letters for the tests (this is like learning a new language!) (and my notes are not nearby), but they're not testing the celiac specific one (Emu?), but the other one that can get false positives for other AI diseases. From what I recall. They are testing for the thing to make sure you have antibodies at all.

Feeling a little frustrated. 

 

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I have type 2 diabetes.  Yes, thin and active my entire life.  Perfect blood pressure, cholesterol, etc. my only risk factor was my Dad who was diagnosed with type 2 at the same time I was diagnosed.  Go figure.  Just living in the US, eating the Standard American Diet and having the right genes is most likely the cause of diabetes though no one really knows. Lots of theories......

If they just ran the cheaper, but effective screening, you can ask for the full panel if the results are negative.  If you have a health plan like Kaiser, note that PCP doctors are prohibited from ordering anything other than the TTG and an IGA deficiency test.  Only a GI can order a full celiac panel.  Yep, my folks had Kaiser and that is how I found out.  

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It is Kaiser! Okay. Good to know. 

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Here is another tip.  Communicate in writing via the patient portal or send a certified letter (if things go sour).  You have no idea what the doctor is writing in your chart (or sadly, if even listening).  You put it in writing and they have to respond.  Keep all your medical records.  Print them off!  I have changed plans and doctors over the years.  Nothing like definitive proof of a diagnosis to insure support.  Always be pleasant and nice!  

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The lab results are trickling in one by one, 9 panels so far, but not the one I'm dying to see! 

So far - low iron (32, with a ref range of 50-212) -- that is a much different scale/measurement than I've had done in the past, so I'm having a hard time comparing it to my past. I do take iron supplements everyday, btw.
Ferritin - 14 ng/mL (ref range 22-291 ng/mL)

Cholesterol, triglyceride, HDL, low density lipoprotein - all perfect *gold star*
ALT (liver?) is good. Lipase (pancreas?) is good. 
TSH is great.
The fasting glucose was 93, (standard range being 60-99). 


Does the celiac tests take longer to process? 

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Yes, I think they have to send it out to another lab, but I am not sure.  Testing for celiac disease is not common like checking blood glucose or a CBC panel.  It will probably take a few days.  

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14 hours ago, cyclinglady said:

Yes, I think they have to send it out to another lab, but I am not sure.  Testing for celiac disease is not common like checking blood glucose or a CBC panel.  It will probably take a few days.  

This just came in. 

Component Your Value Standard Range
IgE, QN 101 U/mL   (range 

0 - 130 U/mL)

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23 minutes ago, ByeRye said:

This just came in. 

Component Your Value Standard Range
IgE, QN 101 U/mL   (range 

0 - 130 U/mL)

IgE?  Normally, they run an IgA deficiency test because the celiac tests are either IgA or IgG.  The IgA deficiency test is used as a control test in the case of screening for celiac disease.

IgE is for allergies.  Maybe your doctor made an error, or he was checking for allergies of an unknown source (like a parasite or constant bombardment of allergens at the same time).  In any case, you are normal. No allergy overload.  But I am not a doctor, so consult with yours!  

I think he goofed.  If he suspected allergies, I think he would refer you to an allergist.  

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I was very clear that I wanted celiac testing. It could be that the celiac specific tests, the two he said he ordered, still haven't popped up yet. I also have my request for the celiac tests clearly stated in the message system - so it's documented!  So I am assuming they are still processing...

 

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Looking at all the panels that were run (more than I expected!) it seems he was trying to cast a really wide net to see what would pop up. 

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This just in:

Component Your Value Standard Range
IgA 243 mg/dL  range: 40 - 375 mg/dL

 


So, that's a negative? 

 

ETA: never mind, I think this just the one to make sure the actual celiac test will be accurate. 

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Yep, you are not IgA deficient, so the celiac test (remember Kaiser usually orders just one) TTG IgA should give you a valid result.  You will not need this test run again, if you need to pursue the other celiac tests: DGP and EMA.  

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Just curious.  What were your cholesterol results?  Mine were always super low (like total was 116 and HdL was 32.  Got a lot of pats on my back from my doctors, but I found that I was not absorbing well.  A low HDL is not good.  Now my HDL is 64 after being gluten free, healing and absorbing nutrients.  

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2 minutes ago, cyclinglady said:

Just curious.  What were your cholesterol results?  Mine were always super low (like total was 116 and HdL was 32.  Got a lot of pats on my back from my doctors, but I found that I was not absorbing well.  A low HDL is not good.  Now my HDL is 64 after being gluten free, healing and absorbing nutrients.  

Component Your Value Standard Range
Cholesterol 163 mg/dL       <=239 mg/dL
Triglyceride 40 mg/dL <=499 mg/dL
HDL 80 mg/dL >=50 mg/dL
Low density lipoprotein calculated  75 mg/dL <=159 mg/dL

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I don't know if this is related to the cholesterol results, but something to possibly consider maybe (?) is that I have been trying desperately to lose weight for 6.5 years. In that time I have managed to lose 90 pounds, so yay? I'm ten pounds for my ideal goal weight (finally). The thing is, I have been *perfect* in my efforts. Eat well, exercise like a fiend. I track everything that goes into my mouth ("input"), and I have had all the fitness trackers to track my "output".  My BMR is 1650, my TDEE is around 2800. I regularly eat around 1800. My weightloss progress has been so maddeningly slow it is beyond ridiculous. My calorie deficit should have had be lose 100 pounds in the first year. But instead it's been a crawl. 


I've found some anecdotal stories from celiac peeps who tell a similar story from their undiagnosed days. I read a theory that because of the malabsorption that the body is basically in "starvation mode" and holding onto everything it can. It makes sense to me. It would explain a lot. But it's all speculation, obviously. 

Typically, I eat a pretty high fat and low carb diet.

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Finally...

Component Your Value Standard Range
TISSUE TRANSGLUTAMINASE IgG      0.37 Index     <=0.90 Index
Tissue transglutaminase IgA            0.30 Index <=0.90 Index

 

 

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