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Anyone With Same Symptoms? Help Pls!

Guest Tinibash

By Guest Tinibash
in Related Issues & Disorders

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Guest Tinibash
Guest Tinibash
Posted

Hi there. I was diagnosed with celiac approx. 2 years ago. I have been on a gluten free, wheat free diet for the past 2 years, no one told me that I should be dairy free too...I just read that on this forum. Anyway...I have been doing really well, then 3 weeks ago I all of a sudden got horrible pain in my upper abdomen, had horrible diareah and vomitting all night. I went to the dr and they took some blood tests, my potassium was on the low side, SGPT and SGOT were also low. The dr, told me I would be fine and sent me home with Protonix. I haven't been right for 3 weeks. I went to another dr, he took more blood test and he has me scheduled for an ultrasound and endoscopy....I have taken 3 endoscopies (when the were diagnosing me) and they all came out fine, not sure I want to do another one. I started eating more potassium to see if that would help, my stomach is better, not as naseaus, but I have no energy at all. I also get palpitations and shortness of breath. I have read on here that some people have gastroparesis and other things....can anyone help me???? I just want to feel better...I'll do anything!!!

Thank you!!

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CarlaB Enthusiast
CarlaB
Posted

I'm curious, when they diagnosed you, were the endoscopies fine then, or did they indicate celiac?

Were you feeling fine up until three weeks ago?

Did anything happen that might have made your health change?

Guest Tinibash
Guest Tinibash
Posted
I'm curious, when they diagnosed you, were the endoscopies fine then, or did they indicate celiac?

Were you feeling fine up until three weeks ago?

Did anything happen that might have made your health change?

I was feeling fine up until 3 weeks ago. I would have little bouts here and there, when I ate something that I shouldn't have, but I was great. All the endosopes came out normal. They didn't test for celiac at that time, they were checking for ulcers and liver problems and everything else. At that time, my liver enzymes were way over 1000 and I ended up in the hospital twice, because I was have heart attack syptoms, but my heart was fine.

And no, I had no other health problems, I was in the middle of cooking dinner, when I started 3 weeks ago. I was more stressed out at that time, but other than that, I was fine.

Guest j_mommy
Guest j_mommy
Posted

When I was eating gluten...I would get palpatations and shortness of breath! Dr's said it was anxiety even though the tests they gave me to measure anxiety were fine!!!

CarlaB Enthusiast
CarlaB
Posted

So, did they diagnose you based on blood work or dietary response?

I'm asking because I'm gluten intolerant AND have Lyme Disease. Heart palpitations and shortness of breath are Lyme symptoms I get. I don't like to just bring it up all the time here because it's a celiac forum, but the symptoms are so similar to celiac and many Lymies have gluten problems (you can see on Lymenet ... it's a regular topic of conversation).

Lyme is aggravated by stress.

It's something you can check out ... symptoms are at Open Original Shared Link.

I get digestive symptoms from gluten. It's pretty clear when I get glutened. There are a lot of non-GI symptoms of celiac disease as well ...

If it sounds like you, let me know and I'll tell you about other websites ... the one I gave is not my favorite, but it has a good symptom list.

Maybe others here will have other suggestions for you to check out.

Guest Tinibash
Guest Tinibash
Posted

I checked out the website...thank you. I have a couple of the symptoms, but I don't think enough of them. I don't have a rash or anything like that.

I took an allergy test, which showed that I was allergic to wheat, milk and a bunch of other stuff. So, I took it out of diet and I was great. Then the dr wanted me to start adding in more food, I did really good, until I added gluten and wheat. So, I don't know if I should go back and take EVERYTHING back out again or what. The dr was really concerned though, because I was showing that I was allergic to SO many foods, that I wasn't eating very much.

So, I wasn't sure if the symptoms that I am having now could be from low potasium or what? I can't hardly eat for the past 3 weeks, I am always full and my stomach is just soooo upset. And today is just horrible, I have no energy and am very very weak

Thank you for your help and responses!!

Murph Newbie
Murph
Posted

I would think that intestinal candida was a possibility, but I've never heard of it being as sudden as your symptoms. Not that it couldn't still be a part of it - any long-time celiac sufferer is bound to have collateral damage in the battleground of the gut.

One thing that will help is starting a food intake and symptoms diary, if u haven't already. There are many cases of reactions a day (or more) after ingestion, tho most reactions are either a minute or 20 or 45 min, I think. Most of mine were anyway. It really helps to be able to look back at what was eaten when and how did I feel.

Another thing, tho it can be difficult, is to eat the simplest of foods - not premade packaged or canned things w/ ingred lists inches long. Eating salads you've made (I even make my own salad dressing every time), chkn breasts w/ no additives or injections (skinless boneless for me), fish & other straightforward simple foods helps immensely in figuring out which are trouble.

There was a LONG time after I went gluten-free that I felt like I was just plain "allergic to digestion". (Improper use of allergic I know, but I didn't know what else to call it)

Good luck

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CarlaB Enthusiast
CarlaB
Posted

It's odd how it came on all of a sudden like that. I would think about what could have happened different that could have triggered the reaction.

Candida or mercury toxicity could be an issue, but that wouldn't have come on suddenly.

I don't know that an additional food allergy would either.

Rashes aren't a big part of Lyme.

You could do the elimination diet again ... or just keep a food diary noting your symptoms when they occur.

Are you sure you're 100% gluten-free? Even that seems unlikely to be the problem since it came on so suddenly.

Did you just move? Did anything else change?

corinne Apprentice
corinne
Posted

The sudden pain, diarrhea vomiting makes me wonder if you picked up a GI virus. Vomiting is very common with a virus. Even though a viral illness starts suddenly, it can linger and it may take over a month for your system to recover especially if you have celiac. You may experience lingering fatigue.

Ursa Major Collaborator
Ursa Major
Posted
I took an allergy test, which showed that I was allergic to wheat, milk and a bunch of other stuff. So, I took it out of diet and I was great. Then the dr wanted me to start adding in more food, I did really good, until I added gluten and wheat. So, I don't know if I should go back and take EVERYTHING back out again or what. The dr was really concerned though, because I was showing that I was allergic to SO many foods, that I wasn't eating very much.

So, I wasn't sure if the symptoms that I am having now could be from low potasium or what? I can't hardly eat for the past 3 weeks, I am always full and my stomach is just soooo upset. And today is just horrible, I have no energy and am very very weak

Thank you for your help and responses!!

Did you just say you got sick when you added gluten and wheat back into your diet? If you are intolerant to gluten and allergic to wheat, if I read the above right, you've got your answer. And my answer is, yes, PLEASE take it all out again! You have an ignorant doctor.

If you are low in potassium, eat lots of watermelon. They are much higher in potassium than bananas. When my potassium was really low in 2005 when I was so sick, and potassium supplements gave me horrible stomach cramps, I ate lots of watermelon. Within a couple of months my potassium was in the normal range.

kerrih Rookie
kerrih
Posted

I have been gluten free for a year and have had the disease for about the past 20 years of my life. I am 34 now. I was experiencing palpitations and shortness of breath just like you described and it turned out I have hyperthyroidism (which is another autoimmune disorder and sometimes these are all related). I am taking a medicine now to calm down my thyroid and I haven't had heart symp. since. My heartrate would get to 140 and I would almost pass out! By the way, diarrhea is also a sign of hyperthyroid and many people who have celiac also have thyroid problems as well. Bloodwork doesn't always show an abnormal thyroid level. You have to catch it at just the right time, probably when you are symptomatic.

Hope this helps.

2kids4me Contributor
2kids4me
Posted

They should include an endocrine workup including the adrenal glands ...an ultrasound is non invasive and may give them a clue.

My son gets upper abdominal pain form duodenitis and takes an acid redcuer when it happens...pain goes away within minutes of taking his meds (nexium or else gaviscon if the pani isnt too bad).

I hope they find out the cause of your pain !

Sandy

Guest Tinibash
Guest Tinibash
Posted

Hi all! I just want to say thank you to all of you who wrote back...it really helped!!!

Well, they found a stone in my gallbladder, so they are taking out my gallbladder on Tues. BUT...I also went to an endocrinologist and found out that I am low in cortisol, progesterone, intestinal candida and also have adrenenal fatigue. So, I have started the medications and am feeling much much better, so after Tues. hopefully the pain from the gallbladder willbe gone too!!!

Again....thank you!!!!

CarlaB Enthusiast
CarlaB
Posted

That is great news! You are on your way to getting better! YAY!

Thank you for posting the follow up.

  • 2 weeks later...
marlene57 Newbie
marlene57
Posted

Hi CarlaB

Thank you for bringing up the Lyme disease. It made me check it out and I not only have 38 of the symptoms listed, but I've have that very distinctive rash several times. I went straight to the phone and asked the Dr. to test me for Lyme. I live in NH where there is a moderately high incedence. Would you be so kind as to give me the address to your favorite Lyme sight? I'm going to look for Lymenet now.

Thank you again,

Marlene57

So, did they diagnose you based on blood work or dietary response?

I'm asking because I'm gluten intolerant AND have Lyme Disease. Heart palpitations and shortness of breath are Lyme symptoms I get. I don't like to just bring it up all the time here because it's a celiac forum, but the symptoms are so similar to celiac and many Lymies have gluten problems (you can see on Lymenet ... it's a regular topic of conversation).

Lyme is aggravated by stress.

It's something you can check out ... symptoms are at Open Original Shared Link.

I get digestive symptoms from gluten. It's pretty clear when I get glutened. There are a lot of non-GI symptoms of celiac disease as well ...

If it sounds like you, let me know and I'll tell you about other websites ... the one I gave is not my favorite, but it has a good symptom list.

Maybe others here will have other suggestions for you to check out.

CarlaB Enthusiast
CarlaB
Posted

Do you mean you have had the bull's eye rash after a tick bite? If so, that is diagnostic of Lyme Disease!

You need to find an LLMD (Lyme literate MD). Do that by posting in the seeking Dr. section of Lymenet. I will also PM you the name and number of my doctor. If you go to just any doctor, they will tell you that Lyme is no big deal -- I just had a very bad experience yesterday with my ob/gyn who I have been going to for 17 years.

He told me testing was inaccurate (it can be, but it's typically false negatives rather than false positives) and that going to a specialist was a scam. Isn't he a specialist, too? :blink: , don't you go to an oncologist for cancer, an orthodontist for braces? Why not a Lyme specialist? Okay, he ticked me off. :P

You need to be tested by IGeneX (Open Original Shared Link). They are the reliable lab. Testing can be a false negative because it's not direct testing, it's testing for antibodies. If your immune system is too overwhelmed, the antibodies will not show up resulting in a negative test.

I also like Open Original Shared Link. My doctor is the president elect of ILADS.

I'll send you a PM.

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