Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help! Symptoms Of Celiac Or Something Even Worse?

leethinker

Recommended Posts

leethinker Rookie
leethinker
Posted

Hi everyone,

I'm new to this board. I have been experiencing wierd symptoms for over a year now. Let me list them, however, who knows if the symptoms are related. I think it might be Celiac but I'm terrified I might have some horrible deadly disease. I hope you all can help me! My doctor will be doing an endoscopy but I am so anxious I can't wait - I hope you all can help!

So, here are my symptoms:

  • Blurry vision
  • Occasional soars in mouth, cracked corners of mouth, etc... (not always but it does happen)
  • Very very dry skin on hands, particularly inbetween fingers
  • Heart palpitations
  • Constiptation (but sometimes very loose - mostly, however constipation)
  • I have noticed greasy water in the toilet after I've gone, but it is not always like that
  • Most noticeable and bothersome symptoms: (1) Pain (really more like discomfort) in left side, under the lower part of my left rib cage, and; (2) I also feel discomfort/fullness in the middle of my abdomen (the upper section right below/inbetween my two ribs/below the sternum); (3) These lumps just pop up in my stomach, near the area mentioned in (2), which come and go! It's almost as if there's a baby in there! (I've been pregnant twice so I know how it feels)...I just notice it appear, then when I touch it or rub it will completely disappear.
  • Anxiety (quite strong)
  • Depression (Not severe, just a feeling of sadness)

This all started while I was pregnant with my second child. The pain under my rib cage I ignored because I just assumed it was uncomfortable because my son's foot was pushing on it. When the pain/discomfort remained, I started to do some research...

My doctor did a blood test. Most results were very good except for my immune value. He said it is supposed to be under 100 but mine was a whopping 650. He said whatever this value is indicates that I have a food allergy of some sort. Then he did a simple blood test, testing only a few things I might be allergic to, such as nuts, fish, etc., including (he says) gluten. The gluten came up insignificant. But, I had been off gluten (except for pretty much two cheat-nights eating pizza, and mexican) for a couple of weeks. Now I do not know if I was 100% gluten-free, since I wasn't being very very careful, but I think I was.

Anyway, what do you all think about my symptoms???

For those of you with celiac disease, what do you all mean by "digestive problems" or "stomach pains"??? Has anyone had the strange lumps appear and go again? These are not painful. They just pop up and then leave, almost as if I were having a twitch or spasm. Also, what do you make of the left pain under my rib cage?? The fullness in my stomach scares me as well. Actually the whole area of my mid-section and all the pains/discomforts I have really worry me. I feel sometimes like I need to sit up straighter just to feel better. Does that sound wierd? Could this be truly digestive problems due to celiac or something different?

PS - I have actually had CT scan done of the left ribcage area and they found nothing to be worried about at all (in terms of whatever you might find via CT there - tumors, etc.?)

PPS - I have to also mention that my son was allergic to gluten or wheat (not sure which) until he thankfully grew out of it around his first birthday. He got this bad rash on his face every time I gave him some bread, crackers, etc. Once I put him completely off anything with grains (he was pretty much on baby food and starting finger foods at the time) his rash disappeared. I started thinking celiac with myself since my symtoms began while pregnant with him, and maybe he got some kind of allergy from my pregnancy or something...???

Can anyone shed light on my problems?????

Thanks!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


leethinker Rookie
leethinker
Posted
  • Author

just bumping this up because I can't seem to find my post in the board!

GFinDC Veteran
GFinDC
Posted

Do the lumps on your tummy spell a word or phrase? :o OK, sorry, just kidding! :D I have celiac and have plenty of experience with gas and bloating, but I don't remember ever having lumps appear, vs. overall expansion in the abdomen. Maybe that has something to do with you having children, I suppose that could cause a difference there. Have you tried cutting out posssible problem foods yet? Gluten and dairy for instance? I had very bad gas and bloating, to the point I couldn't sleep, or even eat sometimes. And I had pain in my left side also, I think that is the small intestine area.

I think all your symptoms do sound like they could be related to celiac. If the doc does an endoscopy they need to be aware that a single sample is not reliable. From what I 've read the samples need to be taken from 5 to 6 areas.

You'll need to keep eating like you are now until the endoscopy is done. After that the doc will probably tell you to go gluten-free if you have celiac or try an elimination diet. Celiac is a pretty horrible deadly disease though. We can avoid the worst results by following the diet but if we don't do that it can be very bad.

neesee Apprentice
neesee
Posted

Yes, I actually did get lumps in my abdomen. My intestine felt like it was crawling around and then a lump would appear. I got it on my lower right side mostly. I was very thin and I think that's why my intestines were so visible. You could also see my pulse in my abdomen.

neesee

leethinker Rookie
leethinker
Posted
  • Author

Thanks to both of your responses! I know it is a very bad disease, I'm just hoping it's not a deadly disease I have, such as cancer.

I'm glad that someone else has had those lumps appear. I too am quite thin, and I'm sure my abdominal wall is a bit stretched out, which might make those lumps more visible. I also can see my pulse in my abdomen.

I'm going to call my doctor and make an appt for an endoscopy today.

I did try going off gluten for a couple weeks and I really felt like my symptoms were much much better, especially the pain in my side and my dry skin!

But we'll see.

If anyone else has any insights for me, keep them coming. I will also post an update about everything.

Another question - how long does it take to know something/for results after an endoscopy??

bakinghomesteader Contributor
bakinghomesteader
Posted

I am experiencing the lumps myself. It happens when I get constipated. ;) It is stool in the colon moving and trying to get where it needs to go. I end up taking a stool softener so it's not so hard to move.

If your son had the break outs as a baby, he may have celiac in which he will not grow out of it.

Hope things are better today.

leethinker Rookie
leethinker
Posted
  • Author

Hi everyone,

Well I have an appt to discuss getting an upper GI edoscopy next Tuesday with a specialist. So far, my family doc doesn't think it is Celiac. In fact, I think he thinks I'm just anxious! <_<

Today I've been having a wierd sensation in my neck. It's a very light burning sensation - almost like heartburn but not quite, and it is not in my throat/chest like heartburn, but in the sides of my neck area. Strange. But on the other hand, my DD had her 4th bday yesterday and we ate pizza and had ice-cream cake, cookies, etc. I am probably paying the price today.

I've become so paranoid about all my symptoms that I think I'm going crazy!?

This is more like a rant, but I just want to get this GI endoscopy done!!! I am terrified I have some horrible cancer. I just want to know it's not that.

Anyway, do you think I should mention to the specialist that I think it could be Celiac?? It seems that doctors do not like patients telling them what they think they have, and Celiac seems to be some kind of curse word with doctors. What's up with that?

ugh, I feel sick and tired of all the strange aches and pains I constantly have. I'm tired of being constipated. I'm tired of feeling TIRED all the time regardless of how much sleep I get. I'm tired of feeling anxious and I'm tired of this burning feeling in my neck. And I'm tired of feeling like I'm going crazy, like I'm some sort of hypochondriac!!!!

Thanks for listening to me rant.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

I just fire doctors that do not listen to me.

Your fired.......and then I find another one. I have a good one now, but I went through a lot to get to her.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.