Possible celiac? Frustrated and upset

[KJDx 2]

Hi everyone,

I'm new to this forum but I think I may have coeliac disease, the doctors say it could be anyway or possibly h pylori 

Constant pain above my navel, nausea, anaemia, joint pain, bloating, migraines, depression, mood changes, feeling "not all there" and feeling so tired I could sleep all day! I just don't want to get out of bed let alone the house  these are just a few symptoms I have to cope with every single day! It's so frustrating! I just want to feel normal!!! I also have what feels like a lump in my throat at times and excess mucus all the time.

Ive been suffering from this for years now, not this bad of course. And I've got the common answers from the doctors "it's IBS, excess stomach acid" you name it.. 

Recently I went to the doctors and persisted, pretty much begged for further tests as I couldn't deal with it much longer! I'm waiting on blood results and have a scan soon. Possibly an endoscopy depending on my blood test results. 

Im just wondering if any of you have the symptoms I do? Thank you in advance  

Edited February 12, 2016 by KJDx

[squirmingitch 696]

You have enough symptoms of celiac disease to be tested for it. I had nausea, joint pain, bloating, migraines, depression, mood changes, feeling "not all there" and feeling so tired I could sleep all day! I just don't want to get out of bed let alone the house as well as many, many more.

When you get your blood test results back let's make sure they did the full celiac panel on you because all too often they don't. Here is the full panel:

 

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

 

Make sure you keep eating gluten until ALL testing is completed.

A scan will not tell if you have celiac. An endoscopic biopsy is the next & final step after a celiac blood panel. They need to take 6 biopsies not 1, not 2, not 3. Advocate for yourself & be firm. 

[KJDx 2]

Thank you for your detailed response.

Im not being horrible when I say this nor would I wish it on my worst enemy but it's comforting knowing I'm not alone in this so thank you.

i just feel so physically mentally and emotionally drained at the moment and its taking its toll on me as well as work and my studies  

im hoping to get the results Monday so hopefully I will get the answers I desperately want and need. 

[KJDx 2]

Oh and I'm continuing to eat gluten, I understand it's important to do so until ruling out celiac  

[squirmingitch 696]

Oh you're so welcome! I'm glad you're eating gluten as so many go off it "to see how they feel" & that's usually a very bad thing because they have to go back on it to be tested & usually get even sicker than before they went off it.

When you get the tests back, if you can't make heads or tails of them then post them here along with their reference ranges. We have members who are really good at interpreting them. 

Here's a list of symptoms associated with celiac disease:

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

 

BTW, if celiac is your problem & I feel there's a very good chance it is; you will most likely lose those migraines after being gluten free for a while. I had them for well over 15 years. They were so bad I really thought a bullet would be easier. I have NONE now. Heck, I don't even get headaches anymore! 

[KJDx 2]

Exactly, I've done a bit of research myself and all information told me to continue eating gluten until tests were fully completed.

i don't actually get a report, I just phone up my doctors and they state whether I need to see the doctor to discuss my blood results. Maybe some people do as they live in different countries or have different doctors.

Ouch! I feel your pain! They're horrible! My night of studying soon led to a night of doing nothing but feel sorry for myself haha  

[KJDx 2]

Comfort food is usually the answer when I feel sorry for myself but even that I will gladly turn away right now. That is not me! Haha

[KJDx 2]

I forgot to add also, my ferritin levels were 0.1 which I understand is very low. Another reason why I think celiacs is a possibility.

[squirmingitch 696]

1 hour ago, KJDx said:

Comfort food is usually the answer when I feel sorry for myself but even that I will gladly turn away right now. That is not me! Haha

Awwwwwwwwwwww. I know that feeling and happily it isn't happening anymore.

Yep, ferritin is a real tell tale sign. Have you had your thyroid tested? That's another super common one although mine was fine but my hubs was not. He was hypothyroid.

Vitamin D is often low. Mine was. 

The needles or tingling in hands &/or feet is real commonly reported as well.  Joint & muscle pain is another biggie. 

[SLLRunner 26]

Hi, @KJDx

I know the feelings of frustration well, as I've been dealing with similar symptoms for quite sometime now, which worsened when I was hit with a family emergency in the fall. I went to the doctor with many of the symptoms you describe above, plus swollen lymph nodes. The doctor gave me antibiotics, but they didn't help. In order to get an appointment with a gastroenterologist, I had to take Protoix for 4-6 weeks. It did not help and I have an endoscope a week from today to figure out what is going on.  

I have the heartburn, hurting stomach, digestive problems, stuffiness, sore throat, almost on a daily basis.  Nothing helps. The doctor thought it was good fashioned heartburn, but I have since learned that heartburn and related symptoms are often related to gluten and/or wheat intolerance or celiac disease. 

I also find that we need to advocate for ourselves and get the doctors to listen to us, especially general practitioners who might not have a whole lot of experience in celiac disease or gluten intolerance. 

[SLLRunner 26]

5 hours ago, KJDx said:

Hi everyone,

I'm new to this forum but I think I may have coeliac disease, the doctors say it could be anyway or possibly h pylori 

Constant pain above my navel, nausea, anaemia, joint pain, bloating, migraines, depression, mood changes, feeling "not all there" and feeling so tired I could sleep all day! I just don't want to get out of bed let alone the house  these are just a few symptoms I have to cope with every single day! It's so frustrating! I just want to feel normal!!! I also have what feels like a lump in my throat at times and excess mucus all the time.

Ive been suffering from this for years now, not this bad of course. And I've got the common answers from the doctors "it's IBS, excess stomach acid" you name it.. 

Recently I went to the doctors and persisted, pretty much begged for further tests as I couldn't deal with it much longer! I'm waiting on blood results and have a scan soon. Possibly an endoscopy depending on my blood test results. 

Im just wondering if any of you have the symptoms I do? Thank you in advance  

 

1 hour ago, squirmingitch said:

Awwwwwwwwwwww. I know that feeling and happily it isn't happening anymore.

Yep, ferritin is a real tell tale sign. Have you had your thyroid tested? That's another super common one although mine was fine but my hubs was not. He was hypothyroid.

Vitamin D is often low. Mine was. 

The needles or tingling in hands &/or feet is real commonly reported as well.  Joint & muscle pain is another biggie. 

The tingling in the hands and feet is horrible, in fact.  I am also waiting for my endoscope next Friday. 

[KJDx 2]

6 hours ago, squirmingitch said:

Yep, ferritin is a real tell tale sign. Have you had your thyroid tested? That's another super common one although mine was fine but my hubs was not. He was hypothyroid.

Vitamin D is often low. Mine was. 

The needles or tingling in hands &/or feet is real commonly reported as well.  Joint & muscle pain is another biggie. 

I have but it came back fine apparently. 

The doctor is also checking my vitamin D levels so we shall see. 

I also have tingling/numbness in my hands occasionally and the muscle and joint pain is horrible alongside the fatigue!  

 

[KJDx 2]

4 hours ago, SLLRunner said:

Hi, @KJDx

I know the feelings of frustration well, as I've been dealing with similar symptoms for quite sometime now, which worsened when I was hit with a family emergency in the fall. I went to the doctor with many of the symptoms you describe above, plus swollen lymph nodes. The doctor gave me antibiotics, but they didn't help. In order to get an appointment with a gastroenterologist, I had to take Protoix for 4-6 weeks. It did not help and I have an endoscope a week from today to figure out what is going on.  

I have the heartburn, hurting stomach, digestive problems, stuffiness, sore throat, almost on a daily basis.  Nothing helps. The doctor thought it was good fashioned heartburn, but I have since learned that heartburn and related symptoms are often related to gluten and/or wheat intolerance or celiac disease. 

I also find that we need to advocate for ourselves and get the doctors to listen to us, especially general practitioners who might not have a whole lot of experience in celiac disease or gluten intolerance. 

Hi @SLLRunner

Good luck with your endoscopy I know how it feels to have such horrid symptoms on a daily basis and all you want is answers. 

I personally feel doctors don't assess people for celiacs enough and don't have enough knowledge on the topic. As I said in my above post I got fobbed off for years with lansoprazole, esomeprazole and every other PPI, also buscopan and mebeverine. I'm hoping doctors will test more people for it in the near future because too many people are misdiagnosed and are left frustrated like us.

[KJDx 2]

Hi @SLLRunner,

I hope your endoscopy went well today and you are closer to getting answers  

[SLLRunner 26]

2 hours ago, KJDx said:

Hi @SLLRunner,

I hope your endoscopy went well today and you are closer to getting answers  

Thank you so much, @KJDx,endoscopy is at 1:45 p.m., so at least I got breakfast and can drink water up until 10:45 this morning. Going to the gym soon for some weight lifting and trying to find ways to pass the time.....without food and water.

[KJDx 2]

19 hours ago, SLLRunner said:

Thank you so much, @KJDx,endoscopy is at 1:45 p.m., so at least I got breakfast and can drink water up until 10:45 this morning. Going to the gym soon for some weight lifting and trying to find ways to pass the time.....without food and water.

Oh I see, well I hope all goes well keep me posted  

[SLLRunner 26]

4 minutes ago, KJDx said:

Oh I see, well I hope all goes well keep me posted  

Thank you, @KJDx, it actually went okay. The  GI doctor did not see any ulceration or erosion in my esophagus, and my stomach and duodenum looked normal. However, he took numerous biopsies and for numerous conditions, including celiac and h-pylori. I will get the results of the biopsies in about three weeks. 

We talked about possible gluten sensitivity, and the doctor said that he believes it is a recognized diagnosis even if you don't have celiac disease. So, for now, I wait and follow a normal acid reflux diet. 

I like this doctor because he sounds well informed on celiac disease.

[KJDx 2]

On 20 February 2016 at 11:48 AM, SLLRunner said:

Thank you, @KJDx, it actually went okay. The  GI doctor did not see any ulceration or erosion in my esophagus, and my stomach and duodenum looked normal. However, he took numerous biopsies and for numerous conditions, including celiac and h-pylori. I will get the results of the biopsies in about three weeks. 

We talked about possible gluten sensitivity, and the doctor said that he believes it is a recognized diagnosis even if you don't have celiac disease. So, for now, I wait and follow a normal acid reflux diet. 

I like this doctor because he sounds well informed on celiac disease.

Glad to hear it went well @SLLRunner  so you're just waiting for the results now then. One step closer to answers though! 

I'm still waiting for my blood test results, feeling so sick and in horrible pain tonight  the sooner I know the better. 

[SLLRunner 26]

17 minutes ago, KJDx said:

Glad to hear it went well @SLLRunner  so you're just waiting for the results now then. One step closer to answers though! 

I'm still waiting for my blood test results, feeling so sick and in horrible pain tonight  the sooner I know the better. 

Waiting is the hard part, but I do know that the endoscopy biopsy is the gold standard for celiac diagnosis so hopefully I will get some answers. I already know that I am sensitive to wheat and/or gluten by my own experimentation, so I have to make dietary changes no matter what the diagnosis is.  

When did you have your blood tests done? With my doctor, it never takes longer than a few days. Yep, waiting for the biopsy results seems like a long time.

[KJDx 2]

20 minutes ago, SLLRunner said:

Waiting is the hard part, but I do know that the endoscopy biopsy is the gold standard for celiac diagnosis so hopefully I will get some answers. I already know that I am sensitive to wheat and/or gluten by my own experimentation, so I have to make dietary changes no matter what the diagnosis is.  

When did you have your blood tests done? With my doctor, it never takes longer than a few days. Yep, waiting for the biopsy results seems like a long time.

Waiting is definitely the hard part! People just don't understand how I feel most the time and it's so frustrating! 

I had them done 10th feb, but they take 7-10 working days because they've tested for quite a few things. Also the celiac screening and my vit d levels.