Hello new here. I think I may have Celiac Disease

[pablito 0]

I'm 43 years old. I'm married and have two teen daughters. After all these years it was one of my daughters who tonight said to me: "you probably have Celiac disease" after hearing my wife and I talking about all the pimples I always get on my arms.

I never heard of the disease but I have heard about a lot of people having gluten allergies and didn't know they were the same thing.

So I started looking it up on the internet. Turns out I have had all the symptoms all my life and no one has ever said anything about it possibly being Celiac disease.

When I was a kid my doctor gave me prescriptions to antibacterial soaps to use for the arm pimples. Hibitane I think was one of them. And I've always had swollen looking ankles as long as I can remember. All my life people have noticed it. As a kid and teen I played lot's of sports and have broken my ankles and sprained them so my mom and I brushed it off at that and so did my family doctor when I was young.  But I always thought it was weird that the swelling continued all these years.  I have had a bloated feeling stomach all my life too and chronic diarrhea. My stomach is always hard and swollen feeling.

Not ever knowing what that stuff was related too so I have never mentioned the bloat or diarrhea to a doctor. Just kind of embarrassing I guess.

As my wife and I were reading about Celiac Disease on the internet together tonight she pointed out to me that that's probably why these symptoms almost all went away when I did a very low carb diet for about a year straight to lose weight a couple years ago. I had solid bowel movements, no bloat, ankle swelling went down but I thought the improvements were from weight loss and just eating healthier . But perhaps in reality it probably had a lot more to do with not eating all the wheat products/gluten products.

So tomorrow I will be seeing my doctor to talk to him about it and to ask for the blood tests. I have read that I should continue eating gluten though until my testing is done. So that is crappy but I guess it's better to know for sure.

Something else I think I should point out too is that I get headaches quite a bit after having big meals. Now I am thinking that may have something to do with the gluten too. I have read that some people with Celiac also get headaches with the other symptoms.

It's great to see there is a forum like this to help people out with these issues. If I test positive for Celiac I will for sure be following this forum closely for advice and diet/nutrition help.

[GFinDC 805]

Hi Pablito,

Welcome to the forum!

You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information.

The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy.

Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.

[pablito 0]

5 hours ago, GFinDC said:

Hi Pablito,

Welcome to the forum!

You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information.

The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy.

Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.

Thank you very much for the reply and advice I assume doctors didn't know or check into this disease too much back in the early 80's or my family doctor would have easily seen these symptoms and discussed this with me then. If I do have this disease it would explain a lot about my health and overall physical discomfort all my life. Pretty sad if it is the case and it could have been prevented but thankful I know about it now.

I have made an apt with my doctor so shouldn't be long before I know for sure.

Thanks again for your help

[squirmingitch 681]

pablito, here is the full serum (blood) panel. Make sure your doc runs ALL of the tests on it, not just 1 or 2. Insist!!!!! YOU are in charge. Remember that. Some people test negative on the most common 1 or 2 tests they run so it's always better to have the full panel run.

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 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

Remember that celiac disease is a genetically inherited disease so it's important for you to find out if you have it and if so, then your kids & all first degree relatives (siblings, parents) need to be tested every 2 years in the absence of symptoms but right away if symptoms present.

Do not go gluten free after the blood work as if you get positive blood work, you will need an endoscopy which you'll need to continue eating gluten for.

The pimple things may or may not be the celiac rash as there are many skin problems associated with celiacs.

[pablito 0]

23 minutes ago, squirmingitch said:

pablito, here is the full serum (blood) panel. Make sure your doc runs ALL of the tests on it, not just 1 or 2. Insist!!!!! YOU are in charge. Remember that. Some people test negative on the most common 1 or 2 tests they run so it's always better to have the full panel run.

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 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

Remember that celiac disease is a genetically inherited disease so it's important for you to find out if you have it and if so, then your kids & all first degree relatives (siblings, parents) need to be tested every 2 years in the absence of symptoms but right away if symptoms present.

Do not go gluten free after the blood work as if you get positive blood work, you will need an endoscopy which you'll need to continue eating gluten for.

The pimple things may or may not be the celiac rash as there are many skin problems associated with celiacs.

Thank you very much! My doctors apt is in one hour from now so I took a picture of your post to show him so there will be no misunderstandings.

[squirmingitch 681]

Good luck!

[pablito 0]

Just read on the forum here that bone/dental disorders can be associated with Celiac. Two years ago I had an MRI done because of very painful lower back after moving something heavy in my warehouse job. The MRI showed I had two herniated discs and the MRI notes showed Osteoporosis also. I guess that would make sense if I have had Celiac's all my life and my body hasn't been properly absorbing nutrients then I would assume something like Osteoporosis could happen more rapidly and at an earlier age than normal?

What is the average time it takes to receive blood screening results back from a doctor? I imagine that may depend on the work load the lab has at the time?

[pablito 0]

Just finished at the doctors. He said here in Canada the family doctor orders a blood test then if that show's positive he sends me to a specialist and orders the biopsy. He is going to check for lots of different stuff he said but also said it sounds like Celiac. Here are the tests he is getting them to do on me:

[dp ronan 0]

it is good to have the test done if blood comes back with elevated gluten antibodies you should talk to a dietitian and change your diet now.it will and can cause many health problems. good luck

[pablito 0]

1 hour ago, dp ronan said:

it is good to have the test done if blood comes back with elevated gluten antibodies you should talk to a dietitian and change your diet now.it will and can cause many health problems. good luck

Thank you. Yes pretty eye opening reading all the health complications that can be associated with Celiac.

My father past away from Prostate Cancer so the doctor said it is a good time to do blood tests for that too and I've had high blood sugar levels in the past too so he ordered tests to do with that too.

May as well get all the basis covered at the same time.

[cyclinglady 1,429]

2 hours ago, pablito said:

Just finished at the doctors. He said here in Canada the family doctor orders a blood test then if that show's positive he sends me to a specialist and orders the biopsy. He is going to check for lots of different stuff he said but also said it sounds like Celiac. Here are the tests he is getting them to do on me:

He is checking you for several things.  That is great news.  If he strongly suspects celiac disease (and the TTG igA test is negative), please ask for the complete panel which can include the DGP and EMA tests.  Why?  I personally test negative on the TTG.     The TTG is a good screening test because it catches most and is the most cost effective test, but it is not perfect.  

[pablito 0]

17 minutes ago, cyclinglady said:

He is checking you for several things.  That is great news.  If he strongly suspects celiac disease (and the TTG igA test is negative), please ask for the complete panel which can include the DGP and EMA tests.  Why?  I personally test negative on the TTG.     The TTG is a good screening test because it catches most and is the most cost effective test, but it is not perfect.  

Thank you. Ok yes I will do that for sure if the test is negative. I have read that you are not alone; that this has happened to other people too.

[squirmingitch 681]

3 hours ago, dp ronan said:

it is good to have the test done if blood comes back with elevated gluten antibodies you should talk to a dietitian and change your diet now.it will and can cause many health problems. good luck

dp ronan, I just want to stipulate that this kind of comment can mess people up with their testing. It sounds like you're saying the op should go gluten free if the blood tests come back elevated. That is not true because an endoscopy should follow and gluten has to continue to be consumed right up until the endoscopy or it will skew that. 

[squirmingitch 681]

5 hours ago, pablito said:

Just read on the forum here that bone/dental disorders can be associated with Celiac. Two years ago I had an MRI done because of very painful lower back after moving something heavy in my warehouse job. The MRI showed I had two herniated discs and the MRI notes showed Osteoporosis also. I guess that would make sense if I have had Celiac's all my life and my body hasn't been properly absorbing nutrients then I would assume something like Osteoporosis could happen more rapidly and at an earlier age than normal?

What is the average time it takes to receive blood screening results back from a doctor? I imagine that may depend on the work load the lab has at the time?

Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle.

Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to.

1 hour ago, pablito said:

Thank you. Yes pretty eye opening reading all the health complications that can be associated with Celiac.

My father past away from Prostate Cancer so the doctor said it is a good time to do blood tests for that too and I've had high blood sugar levels in the past too so he ordered tests to do with that too.

May as well get all the basis covered at the same time.

Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh?

Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.

[pablito 0]

Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too.

Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure.

Yes I will press to have the other tests done too if this one comes back negative.

[squirmingitch 681]

You're welcome!

Yes, I too, hate waiting for lab results. Ugh!

[pablito 0]

I did have to give urine today at the lab too for the tests the Doctor listed. Not sure which ones the urine is for though.

The ECG only takes 10 seconds when hooked up. I had one done when I was a teen and pretty sure I remember it taking 15 minutes back then. Guess they have things fine tuned now days.

[dp ronan 0]

under assumption that more test would be done after blood. endo .biopsy  sorry . did not say to change diet but to see a nutritionist if confirmed.

[GFinDC 805]

Hi Pablito,

One test I didn't see listed in the doctor's plan is a test for vitamin D levels.  That should be included as well IMHO.  Maybe he/she can add it to the current tests list.

[cyclinglady 1,429]

3 hours ago, dp ronan said:

under assumption that more test would be done after blood. endo .biopsy  sorry . did not say to change diet but to see a nutritionist if confirmed.

No problem.  It is hard to "read between the lines" or many posters leave out critical information.  To be honest, some days I am too much in a hurry, but I want to help someone who may desperately need a response and my answer is wrong or not clear (thank you, brain fog!).  But.....my fellow members always have my back.  

A nutritionist is an excellent idea.  Wish my GI had recommended one, instead of a list of supposedly gluten-free restaurants!  Too many newly diagnosed patients (like me) just converted over to a gluten-free processed foods instead of focusing on natural whole foods which speed healing.  I learned the hard way.  Not to say, I do not indulge in gluten-free goodies!