Help For A Newbie - Blood Testing Monday

[mom2qts]

So happy to have stumbled across this wonderful forum.  Will try to keep this brief -

 

I'm 37 years old.  Last fall, I started having digestive problems - bloating, diarrhea, gassy, etc.  I had an incidence of possible food poisoning or ingesting something that totally didn't agree with me that summer and we kept wondering if it was still from that.  We tried different things to try to figure out what was causing it - thinking maybe it was gallbladder (so I cut out everything greasy, etc) but it didn't really help.  First visit to my doctor in October and they had me try Prilosec. That helped maybe a little bit, but not a lot.  I ended up having pelvic and abdominal ultrasounds in November and they were negative for everything.  I also have a family history of ovarian cancer so pelvic pain is always a concern.  They also drew like a standard blood panel which they said was negative but I am unsure what this all consisted of.

 

The stomach issues persisted.  Also started to have fatigue that was above and beyond what I've had previously - I couldn't get through the days without taking a nap and just felt completely wiped out - some days I felt like I had the flu.  I previously had a diagnosis of mild endometriosis which has never been symptomatic - was diagnosed incidentally as a result of another procedure.  I started to read about digestive issues related to endo and convinced my doctor to put me back on the pill continuously to see if it would help. At the same time, I also started an endo diet which is a pretty restrictive diet which eliminates all sorts of things including wheat.  I did that for about a month and my stomach felt so much better- we didn't know if it was the pill or the diet though.  

 

I started to add things back into my diet to see if I could figure out if there was something specific that was causing it.  I didn't seem to have a problem with milk or sweets or meat or some other things I added back, but I started to notice a problem with wheat.  I would say that while on the month of the endo diet, I would be surprised if I had completely eliminated gluten as I really wasn't intending to eliminate gluten - I was focusing more on wheat. 

 

I never really thought about celiac at all until I started to do some researching about the different things it could cause.  I have had the following symptoms: 

 

fatigue

digestive issues - bloating, gas, diarrhea mostly, rarely ever constipation

mental fog

dizziness

mouth sores

muscle pain/fatigue

skin rash - mostly during the winter though

mild headaches

eye twitching

irritability

symptoms at night that I am unsure if are related to the pill or the diet - sweating, crazy dreams, wake up sometimes and my heart seems like it is racing.

 

It's hard to know if this could be celiac.  I had tried to go completely gluten free for several days before I decided to sign up for blood testing - and noticed most if not all of these symptoms went away.  I felt so much better - I could get through a day without taking a nap and my stomach didn't hurt, I didn't bloat up after eating, etc.  The mouth sores were what really got me thinking about gluten - I have had in the past canker sores and cold sores from time to time but usually would be related to stress, illness or sun exposure or something like that.  When I went back on a normal diet after the elimination diet, I started to have mouth sores that just kept coming back - even though I wasn't stressed or wasn't getting sick.  I also at the same time had a very itchy rash on my legs and sometimes on my arm- I've had this kind of rash in the past but always thought it was just dry skin in the winter.  I have to say it was not as blistery as some of the pictures I have looked at that go with the celiac type of rash.

 

Historically, I would say I have had a sensitive stomach.  For years, I could never eat steak because it just gave me almost instant diarrhea.  I even went to the allergy doctor after one particularly bad diarrheal reaction to steak and they could not find anything (they did skin testing only).  I would have problem with fried foods if I ate too much for a long period of time.  I guess this is why I thought gallbladder initially but the tests haven't found anything wrong with my gallbladder and my symptoms really don't match that profile either.  It has gotten to the point though where it seems like most things in my normal diet (when I didn't watch at all what I ate) bothered my stomach.  

 

I would say I also have had a history of being easily fatigued, mostly with my muscles - if I overdid it on something, I could always feel it the next day or week.  Sometimes it seemed like I was one of those people where the weather caused muscle pain or I would just have muscle pain I couldn't explain by other reasons.  This latest incident has been to an all new level though.  In the mornings, I just feel totally wiped out - it is so hard to get out of bed or to make it through the day without a rest.  If I have a big day, I am just completely exhausted and have to lay down and rest to even function.  One night I felt so awful, like I said it felt like I had the flu or something.  I also had my thyroid checked which was negative.  I have 4 kids so my doctor basically said - you have 4 kids, you are going to be tired.  This has been a change though. . . I just have no energy whatsoever (even when I exercise, etc).

 

So I guess my questions are:

 

1) is it reasonable to think that I may have celiac disease or a gluten intolerance?

2) if yes, what is the specific list of tests I should ask for?  I want to do this right and have a feeling my doctor isn't going to know what to order so I will need to hold his hand.  This was the list I had from reading other posts:  

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

iron, ferritin, B12, D, calcium and potassium

 

3) if the results are positive on the blood tests, do you NEED an endo and/or GI consult?  The doctor I'm seeing Monday is just my general doctor.  I'm looking to do the least harm here and not crazy about undergoing surgery or unneeded tests which I may be talked into

4) can you just develop this kind of problem out of the blue at age 37?

5) if being sort of off gluten for a month several months ago and completely for several days in the last two weeks will mess up the test results?  

6) if getting tested is worth it or if I should just go gluten free?  I'm thinking there might be times where you need a doctor's diagnosis to get a special diet (thinking of traveling here but maybe other things I'm not considering)  

7) anything else you can think that I'm missing

 

Thank you in advance for your help!

[nvsmom]

Welcome to the board.

 

 

1) is it reasonable to think that I may have celiac disease or a gluten intolerance?

Your symptoms could definitely be from an gluten intolerance or celiac. I think it's a good idea to be tested for celiac disease. Make sure you have gluten in your diet for a few weeks before the blood tests.

 

2) if yes, what is the specific list of tests I should ask for?  I want to do this right and have a feeling my doctor isn't going to know what to order so I will need to hold his hand.  This was the list I had from reading other posts:  

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

iron, ferritin, B12, D, calcium and potassium

Yes, those are the tests you want. The AGA tests are older and not as reliable. The DGP tests are new and very specific to celiac, the EMA test is as well.

 

3) if the results are positive on the blood tests, do you NEED an endo and/or GI consult?  The doctor I'm seeing Monday is just my general doctor.  I'm looking to do the least harm here and not crazy about undergoing surgery or unneeded tests which I may be talked into

The endoscopy is not needed but many people feel better having one to rule out other problems or to assess the current level of damage. That being said, I did not have one, nor did I see a GI.

 

4) can you just develop this kind of problem out of the blue at age 37?

Yes... unfortunately.

 

5) if being sort of off gluten for a month several months ago and completely for several days in the last two weeks will mess up the test results?  

It's unlikely. Eating "gluten light" will still produce antibodies, and not eating gluten for just a few days should not make a difference. If you are worried it might, eat more gluten until you test... enjoy those last oreos!  LOL

 

6) if getting tested is worth it or if I should just go gluten free?  I'm thinking there might be times where you need a doctor's diagnosis to get a special diet (thinking of traveling here but maybe other things I'm not considering)  

I found it helpful to have a diagnosis so I would be sure to stay off gluten. I was used to living with pain, and was quite used to it, and I'm not sure if that would have been enough prodding for me to try gluten-free eating.  I hav not found a situation where having a diagnosis helped my daily living though.

 

7) anything else you can think that I'm missing

Looks good to me.  Good luck with your tests and on the gluten-free diet.

[mom2qts]

Welcome to the board.

 

 

1) is it reasonable to think that I may have celiac disease or a gluten intolerance?

Your symptoms could definitely be from an gluten intolerance or celiac. I think it's a good idea to be tested for celiac disease. Make sure you have gluten in your diet for a few weeks before the blood tests.

 

2) if yes, what is the specific list of tests I should ask for?  I want to do this right and have a feeling my doctor isn't going to know what to order so I will need to hold his hand.  This was the list I had from reading other posts:  

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

iron, ferritin, B12, D, calcium and potassium

Yes, those are the tests you want. The AGA tests are older and not as reliable. The DGP tests are new and very specific to celiac, the EMA test is as well.

 

3) if the results are positive on the blood tests, do you NEED an endo and/or GI consult?  The doctor I'm seeing Monday is just my general doctor.  I'm looking to do the least harm here and not crazy about undergoing surgery or unneeded tests which I may be talked into

The endoscopy is not needed but many people feel better having one to rule out other problems or to assess the current level of damage. That being said, I did not have one, nor did I see a GI.

 

4) can you just develop this kind of problem out of the blue at age 37?

Yes... unfortunately.

 

5) if being sort of off gluten for a month several months ago and completely for several days in the last two weeks will mess up the test results?  

It's unlikely. Eating "gluten light" will still produce antibodies, and not eating gluten for just a few days should not make a difference. If you are worried it might, eat more gluten until you test... enjoy those last oreos!  LOL

 

6) if getting tested is worth it or if I should just go gluten free?  I'm thinking there might be times where you need a doctor's diagnosis to get a special diet (thinking of traveling here but maybe other things I'm not considering)  

I found it helpful to have a diagnosis so I would be sure to stay off gluten. I was used to living with pain, and was quite used to it, and I'm not sure if that would have been enough prodding for me to try gluten-free eating.  I hav not found a situation where having a diagnosis helped my daily living though.

 

7) anything else you can think that I'm missing

Looks good to me.  Good luck with your tests and on the gluten-free diet.

Thank you Nicole!