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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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    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
    • xxnonamexx
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    • Aretaeus Cappadocia
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      By Aretaeus Cappadocia · Posted

      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response.
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      By Aretaeus Cappadocia · Posted

      I like the Wolff's brand coarse kasha in the grocery store, but I also like the Azure Standard products (AzureStandard.com) for buckwheat, amaranth and other ingredients. The Wolff's package in my pantry is labeled "gluten free". Azure says that their packaging plant has an allergen control program but almost none of their products are labeled gluten free. I have been relying on Azure a lot for my gluten-free diet and the global outcome has been good but I never know for sure for any given product. I eat something I bought from them pretty much every day. (wish I could tell you something more definitive) Full transparency: I was diagnosed with celiac by antibody test (10x the threshold) and by biopsy, and now my antibody levels are 1/10 of the threshold, so my diet appears to be very gluten safe. However, I never had any clear acute symptoms so I never know for sure when I'm consuming gluten.
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