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Please Help! Symptoms Of Celiac Or Something Even Worse?

leethinker

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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!

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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.

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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.

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    • SamAlvi
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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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