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Another Newbie

KMMO320

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KMMO320 Contributor
KMMO320
Posted

Hello all, I'm new :)

I have had some problems for a long time but always accepted them as "normal" for me. I have had serious digestion problems for 17 years. I saw a GI dr maybe 10 years ago and he shrugged his shoulders and said it was Ibs.

I just dealt with it and assumed it was normal to have to think about where all my restroom options were wherever I went.

Shortly after, I was diagnosed with Hypothyroidism and soon after that, I had my gallbladder removed.

All was fine for several years but I started developing migraines, but again, I just accepted it and dealt with it.

Last year, I got a migraine so bad that I was rushed to the Er by ambulance. I was showing stroke like symptoms, including tingling and numbess in my arms and legs, numbness on my left side, and I was speaking in gibberish. It was all quite scary.

Since then, I have always felt awful. I mean, just a constant state of fogginess, always dizzy, short of breath and I just feel miserable after every meal, more so than the digestive issues Ive had in the past.

I still never connected anything. I assumed it was all separate issues. I thought maybe I was hypoglycemic and that was why I was dizzy a lot, or short of breath. I thought maybe its because I am a little over weight, maybe I have had too much coffee.

But when I get tired...I am exhausted. Fatigued isnt the word. It feels like there is nothing I can do but lay down. I dont want to be bothered, I feel nauseus all the time and I just want to sleep or cry.

My dr did a routine blood test for my thyroid recently and called me up sort of worried. She checked my Iron, B12 and vitamins K and D levels and they were extremely defficient, as were my IGa level, which is why the Celiac test she took was void.

This was the first time anyone mentioned the possibility of celiac disease to me and I am nervous. This will rock my entire world as I know it. I see a GI specialist on May 22. I am really concerned that no Dr had ever suggested this as a possibility before..rather, it was brushed off as IBS and when I was hospitalized, they didnt think to check my vitamin levels? I am concerned, scared and overwhelmed. Of course it all makes sense now when I put all these things together...but what if it isnt celiac disease..then whats wrong with me??

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mushroom Proficient
mushroom
Posted

Okay, slow down and take a deep breath. Welcome to the board, and let's hope you get a real diagnosis soon. IBS should be wiped from the medical lexicon because it is only used when they don't know what else you might have or when they are too lazy to find out. It is not uncommon for celiac patients to be diagnosed with IBS for years (or all their lives!!).

Did your doctor run the IgG versions of the celiac tests since you are IgA deficient, or is she leaving that for your GI to do? That is the next step, and she could short-circuit the process. If any of these is positive or (if he is a good GI) he will schedule you for an EGD with biopsies to find out what is going on down there and/or confirm the celiac diagnosis.

There is really nothing to be nervous about. Yes, your life will change a bit,, but it is worth changing a bit to feel better and not end up in the ER speaking gibberish :) See if you can get the IgG blood tests before the 22nd and that way you will be one step ahead of the game. The fact that all your nutrient levels were low certainly is a strong indicator of celiac (or at the very least non-celiac gluten intolerance) which interfere with the bodoy's ability to absorb through the intestinal lining. I hope your doc. has started you on some good supplements.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

A lot of us go through life with a DX of IBS. We call IBS "I Be Stumped" around here. It's really more of a symptom than a diagnosis.

They are just starting to realize that Celiac disease is not as rare as they once thought. Most Dr.s don't think to test for it. Your low vitamin levels are a pretty good indication that you're not absorbing things correctly? I'm glad your Dr. has referred you and is not just letting this go.

Most Dr.s like to write RXs to offset symptoms rather than look for the causes of the symptoms. That's probably why they didn't find your low levels at the Hospital? It's shocking to me. Nutrition/vitamin study is an elective course for med students. It should be mandatory, IMO.

You should continue to eat gluten until your testing is over for accurate results. After testing, no matter what they say, try gluten-free for at least 3 months and see how you feel? I hope this is the beginning of your path to wellness.

Mnicole1981 Enthusiast
Mnicole1981
Posted

I went to the ER last year with something similar. Throbbing headaches, nausea, dizziness, and fatigue. That's when I found out I was anemic. My doctor didn't take it any further than that.

KMMO320 Contributor
KMMO320
Posted
  • Author

Thanks everyone. I didnt have any more blood tests done, my Primary pretty much passed that over to the GI dr. I dont see him for another 2 weeks though. I know I have to continue eating gluten, but I never NOT ate Gluten so I am curious to see if I go one day or maybe 2 without it, if I would notice a difference. Would that 1 or 2 days 2 weeks before seeing the Gi dr affect the tests? I am so miserable, and feel sort of stupid for not putting it all together in the first place. Thankfully, I have a family member (not blood related) with celiac disease and so I know I have immediate support, and since she hosts Thanksgiving and Christmas, I am used to the variety of gluten-free foods available. So I know I will be ok, its just an adjustment, and I hate waiting.

nmull #newly diagnosed Newbie
nmull #newly diagnosed
Posted

Hey! I Just wanted to let you know that your story sounds Just Like mine :) First I was diagnosed with Hypoglycemia so I tried to adjust to that, next they took out my Gall bladder, next they diagnosed me with Hypothyroidism, then I was diagnosed with Chronic fatigue syndrome, then fibromyalgia. Along the same time, I was having reoccurring Urinary tract infections and bacteria infections that wouldn't respond to treatment. It was then my gyno suggested Celiac and referred me to a Gastro doc. He Just said it was IBS and the Fibro. After further insisting on my part, I had a upper endoscopy because my bloodwork came back neg. The thing is, I had been on a gluten free diet for 4Weeks per my gyno. So im saying all of this so you will know to stand your ground with the doctor. They Just kept poking antidepressants at me. Which after all of the test and things I was/am depressed. I am 5 mths now gluten free and its still a learning process. Its amazing you have a family member that knows all about Celiac! I am already worried about the holidays but it sounds Like you will have Lots to eat and not have to worry! Think about the positives. With Celiac, all we do is change our diet! You will begin to see a difference in your "IBS" after month or so. You will feel amazing once your vitamin levels are restored im sure. I will be praying for you :)

Mnicole1981 Enthusiast
Mnicole1981
Posted

Hey! I Just wanted to let you know that your story sounds Just Like mine :) First I was diagnosed with Hypoglycemia so I tried to adjust to that, next they took out my Gall bladder, next they diagnosed me with Hypothyroidism, then I was diagnosed with Chronic fatigue syndrome, then fibromyalgia. Along the same time, I was having reoccurring Urinary tract infections and bacteria infections that wouldn't respond to treatment. It was then my gyno suggested Celiac and referred me to a Gastro doc. He Just said it was IBS and the Fibro. After further insisting on my part, I had a upper endoscopy because my bloodwork came back neg. The thing is, I had been on a gluten free diet for 4Weeks per my gyno. So im saying all of this so you will know to stand your ground with the doctor. They Just kept poking antidepressants at me. Which after all of the test and things I was/am depressed. I am 5 mths now gluten free and its still a learning process. Its amazing you have a family member that knows all about Celiac! I am already worried about the holidays but it sounds Like you will have Lots to eat and not have to worry! Think about the positives. With Celiac, all we do is change our diet! You will begin to see a difference in your "IBS" after month or so. You will feel amazing once your vitamin levels are restored im sure. I will be praying for you :)

Did your endoscopy come back positive?

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nmull #newly diagnosed Newbie
nmull #newly diagnosed
Posted

Yes it did but I had already decided that I was going gluten free regardless. I had researched it enough that everything I was feeling was related to gluten. The thing that threw me though was I had Gained weight and most people lost weight. Ugh! Which I wasn't Happy about. Ha

This forum has really helped me with alot of questions so dont hesitate to ask... no stupid questions when it comes to feeling better

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    • knitty kitty
      Son's legs shaking

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    • lizzie42
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