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

Might have Celiac.. so many symptoms and pain!

Janejungle

Recommended Posts

Janejungle Newbie
Janejungle
Posted

Hello. This is my first post. I am at my wits end at this point. I've been experiencing some pretty crazy symptoms and although I don't have a diagnosis yet, I suspect I may have Celiac. A few months ago I threw up after eating some pasta, I felt like I was going to pass out actually and it felt like I was going to die! I thought it was food poisoning.. 

Then I had some VERY BAD fatigue... I was driving once and I literally wanted to get out of the car and lie down on the pavement! It happened again about 3 weeks ago, I was in the store and fatigue hit me like a ton of bricks.. I had to leave! 

I have been trying to lose weight so I stopped eating all wheat, bread, etc.... well what happened truly scared me. I take Metformin for PCOS/pre-diabetes by the way. Anyway, I woke up had something to eat and an hour later felt like I was going to collapse. My heart was beating so fast, thought I was having a heart attack! I went to the doctor and I nearly passed out again in the office, they gave me some sugar to bring up my blood sugar and then I felt okay.

My neck feels swollen, and like there is something in my throat... 

So I've been off gluten/wheat/bread/pasta..etc. for about 2 weeks. At first I felt kind of okay, hmmm... but now I am entering week 3 and I feel like I'm dying! The hunger is still bad... although not as horrendous as before stopping gluten... but the hunger just doesn't want to calm down. I eat and less than an hour later I'm hungry again. 

Can someone provide some advice, thoughts, anything at this point that can help me figure out what to do next... I'm losing my mind and I feel so depressed :( 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome Jane!

If you seriously suspect celiac disease, you should get tested (blood test), but that means you must be eating gluten.  Even being gluten-free for as little as a few weeks can impact your tests results.  Here's more information:

Open Original Shared Link

In the meantime, it sounds like your blood sugar is wonky.  How often do you check your blood sugar?  Do you have a meter?  

This is a good site that you might find helpful with your diabetes:

Open Original Shared Link

I hope you feel better soon! 

Janejungle Newbie
Janejungle
Posted
  • Author

I have a requisition for blood tests, but there is no way that I am going back on gluten. The cramps and pain is horrendous. I've only been off for a couple weeks, and I'm also doing the IgG tests, not really sure what those will show. 

I have suffered with hypoglycemia in the past, and when I wasn't overweight and always dieting, I guess celiac maybe didn't rear it's ugly head... until after I went through something difficult in my life and started eating more carbs and then gained weight. I was never officially diagnosed with diabetes, but have been in the "pre-diabetes' range for a while. And I read that Celiac is either caused by PCOS or PCOS causes Celiac... not sure...

 

kareng Grand Master
kareng
Posted
 

I have a requisition for blood tests, but there is no way that I am going back on gluten. The cramps and pain is horrendous. I've only been off for a couple weeks, and I'm also doing the IgG tests, not really sure what those will show. 

I have suffered with hypoglycemia in the past, and when I wasn't overweight and always dieting, I guess celiac maybe didn't rear it's ugly head... until after I went through something difficult in my life and started eating more carbs and then gained weight. I was never officially diagnosed with diabetes, but have been in the "pre-diabetes' range for a while. And I read that Celiac is either caused by PCOS or PCOS causes Celiac... not sure...

 

 

 

I have a requisition for blood tests, but there is no way that I am going back on gluten. The cramps and pain is horrendous. I've only been off for a couple weeks, and I'm also doing the IgG tests, not really sure what those will show. 

I have suffered with hypoglycemia in the past, and when I wasn't overweight and always dieting, I guess celiac maybe didn't rear it's ugly head... until after I went through something difficult in my life and started eating more carbs and then gained weight. I was never officially diagnosed with diabetes, but have been in the "pre-diabetes' range for a while. And I read that Celiac is either caused by PCOS or PCOS causes Celiac... not sure...

 

It is too bad the doctor didn't advise you to take the blood tests before going gluten free.  There is a chance they could still be positive.....  But a good chance that being gluten-free for weeks will make them negative.  

I Have not seen any medical evidence that Celiac disease is caused  by any other disease. It is a genetic auto immune disease.  

 

Perhaps you should read some info from reliable source s like the Univ of Chicago Celiac Center?  

Open Original Shared Link

rehh05 Apprentice
rehh05
Posted

I agree with the previous posts. Get some reliable info. Also, have you had your thyroid checked? Might be something to think about. Just don't panic, breathe... Keep your blood sugar where it needs to be. Good luck figuring it all out!

 

 

 

 

 

Estes Contributor
Estes
Posted

I also have a lump feeling on my throat.  It is the side of my Adam's apple.  My endoscopy showed Open Original Shared Link, H Pilori positive, gastritis, and hiatal hernia.  No wonder I keep clearing my throat.  I apologize for the link mid sentence.  I just wanted to provide some potential reasons for some of your issues.

Open Original Shared Link
 
Janejungle Newbie
Janejungle
Posted
  • Author

Thanks everyone for your response. 

Yes, I am currently taking thyroid. My TSH goes between 3 and 5... so that fluctuates. 

It seems like my heart starts beating fast sometimes for no apparent reason, sometimes it will happen in the morning, sometimes mid-day... and I'm ALWAYS hungry. It is non stop. 

I know going back on gluten won't help me or help me lose some weight, but I somehow didn't have all these issues when I was eating the bread, pasta... maybe because they were a source of carbs and energy that I needed to not make my blood sugar drop low??  I don't know. 

I feel like giving up. So tired of suffering. 

 

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi JaneJungle,

You are very early in the gluten-free diet and recovery process.  Our bodies don't get better instantly, it takes time to start absorbing nutrients properly so tissues can heal.  Also the immune response keeps going for a variable amount of time, possibly months in some people.

If you aren't going to continue testing for celiac, you may as well seriously start learning the diet now.  Please read the newbie 101 thread for starters.  It's sticky posted on some forums.  Then start eating right for  a new celiac.  Sticking with home cooked meals of whole foods.  No processed foods.  No restaurants.  Stick with meats, veggies, nuts, maybe a little fruit but limit it.  No sugar and limited carbs.   Some people have to give up dairy for a while to get better.  18 months is not too long to expect for full recovery.  It's not a bad idea to take some multi-vitamins, as long as you verify they are gluten-free.

Celiac recovery seems to be a zig-zag line not straight line.  We may feel better and then feel worse and then better again.  Simple meals are a good thing for celiacs trying to get healed up.

I hope you feel better soon.

 

 

cyclinglady Grand Master
cyclinglady
Posted

Jane,

With insulin resistance (prediabetes is like being pre-pregnant),  you can not make drastic changes to your diet without monitoring your blood sugar to determine how certain foods affect you.  Especially being on Metformin.  Your doctor probably prescribed a dosage based on the Standard American Diet.  If you sudden cut carbs while you are on a higher dose of Metformin, you are going to experience the unpleasant lows.  I urge you to read the site I posted earlier and get yourself a cheap, but reliable meter at Walmart and start testing (follow the directions on the site).  

Most doctors do not have a clue about how to manage diabetes.  It is up to you to take control of your life.  Honestly, as nice as your doctor is, he or she will not have to worry about the long term complications of diabetes -- like getting your foot chopped off!  

Celiac disease, PCOS, thyroiditis.....all must be managed by you.  That means researching and understanding your diseases.  Working with your doctor to determine the best care.  Knowing that your doctor does not know everything.  I know you are sick, feeling awful, but there are solutions to improve your health.  

Hungry?  Your hormones are wonky.  Eat fat, eat protein.  Yes, as a diabetic, this morning I ate two eggs fried in a blob of butter, plain yogurt flavored with vanilla and a blob of heavy cream to increase the fat.  I threw in a few fresh blueberries.   Steamed some califlower with another blob of butter.   I added coconut oil and heavy cream to my coffee.  This will keep my blood sugar at normal levels until lunch.  Will it work for you?  Only your meter readings can tell.  I used to test up to 10 times a day until I figured which foods work as everyone is different.  

I know we are just strangers on the Internet, so it is up to you to validate our recommendations through research.  It is your life!  Only YOU can be your best health advocate.  

Jmg Mentor
Jmg
Posted
 

 

It seems like my heart starts beating fast sometimes for no apparent reason, sometimes it will happen in the morning, sometimes mid-day... and I'm ALWAYS hungry. It is non stop. 

I know going back on gluten won't help me or help me lose some weight, but I somehow didn't have all these issues when I was eating the bread, pasta... maybe because they were a source of carbs and energy that I needed to not make my blood sugar drop low??  I don't know. 

 

 

It sounds like your blood sugar is spiking and plunging rapidly. In which case the bread and pasta is the least thing you need. Have you come across the glycaemic index diet? The idea is that you avoid spiking your blood sugar by eating carbs that take longer to convert to sugar. You also need to make sure you get a good proportion of protein in each meal. It proved very effective for me in reducing / eliminating hunger pangs.

Open Original Shared Link

 

Janejungle Newbie
Janejungle
Posted
  • Author
 

Hi JaneJungle,

You are very early in the gluten-free diet and recovery process.  Our bodes don't get better instantly, it takes time to start absorbing nutrients properly so tissues can heal.  Also the immune response keeps going for a variable amount of time., possibly months in some people.

If you aren't going to continue testing for celiac, you may as well seriously start learning the diet now.  Please read the newbie 101 thread for starters.  It's sticky posted on some forums.  Then start eating right for  anew celiac.  Sticking with home cooked meals of whole foods.  No processed foods.  No restaurants.  Stick with meats, veggies, nuts, maybe a little fruit but limit it.  No sugar and limited carbs.   Some people have to give up dairy for a while to get better.  18 months is not too long to expect for full recovery.  It's not a bad idea to take some multi-vitamins, as long as you verify they are gluten-free.

Celiac recovery seems to be a zig-zag line not straight line.  We may feel better ant then feel worse and then better again.  Simple meals are a good thing for celiacs trying to get healed up.

I hope you feel better soon.

 

 

Thanks for your response and kind words. 

I think that I eat very healthy, I rarely go out.. but my downfall before was bread/pasta... mainly because it helps boost my blood sugar and I can actually function throughout the day. Plus it's easier to grab a pita or bagel then prepare all the meals I have to now... it is so time consuming and draining.. I wake up and think, God not another day of constantly preparing meals... it just seems so daunting..

Also, I don't have much of a life these days, and trying to explain to others that I can't go out because I don't feel well makes me even more sad. 

Janejungle Newbie
Janejungle
Posted
  • Author
 

Jane,

With insulin resistance (prediabetes is like being pre-pregnant),  you can not make drastic changes to your diet without monitoring your blood sugar to determine how certain foods affect you.  Especially being on Metformin.  Your doctor probably prescribed a dosage based on the Standard American Diet.  If you sudden cut carbs while you are on a higher dose of Metformin, you are going to experience the unpleasant lows.  I urge you to read the site I posted earlier and get yourself a cheap, but reliable meter at Walmart and start testing (follow the directions on the site).  

Most doctors do not have a clue about how to manage diabetes.  It is up to you to take control of your life.  Honestly, as nice as your doctor is, he or she will not have to worry about the long term complications of diabetes -- like getting your foot chopped off!  

Celiac disease, PCOS, thyroiditis.....all must be managed by you.  That means researching and understanding your diseases.  Working with your doctor to determine the best care.  Knowing that your doctor does not know everything.  I know you are sick, feeling awful, but there are solutions to improve your health.  

Hungry?  Your hormones are wonky.  Eat fat, eat protein.  Yes, as a diabetic, this morning I ate two eggs fried in a blob of butter, plain yogurt flavored with vanilla and a blob of heavy cream to increase the fat.  I threw in a few fresh blueberries.   Steamed some califlower with another blob of butter.   I added coconut oil and heavy cream to my coffee.  This will keep my blood sugar at normal levels until lunch.  Will it work for you?  Only your meter readings can tell.  I used to test up to 10 times a day until I figured which foods work as everyone is different.  

I know we are just strangers on the Internet, so it is up to you to validate our recommendations through research.  It is your life!  Only YOU can be your best health advocate.  

Thanks for your detailed response. 

Yes, I have had to lower my dosage of Metformin since stopping all bread/pasta.. etc. I went from 2500mg to 1500mg.. in like a matter of a week! 

I do have a meter, just not used to checking it all the time.. I did check it yesterday and in a matter of a minute my blood sugar went from 10 mmol/L to 3.9 mmol/L ... that's just nuts ?!?!

I find that I was having some pancreatic pain when I eat too low carb and too high fat... when I was eating more carbs, the pancreatic pain stopped... which is why I kept going and kept eating the bread.. I thought I was actually healing myself and getting better! Guess I was wrong! 

But, from what I've read here, there seems to be those who are hypoglycemic without having diabetes as well.... is that something that many experience as well? 

 

Janejungle Newbie
Janejungle
Posted
  • Author
 

It sounds like your blood sugar is spiking and plunging rapidly. In which case the bread and pasta is the least thing you need. Have you come across the glycaemic index diet? The idea is that you avoid spiking your blood sugar by eating carbs that take longer to convert to sugar. You also need to make sure you get a good proportion of protein in each meal. It proved very effective for me in reducing / eliminating hunger pangs.

Open Original Shared Link

 

Yes, that is exactly what it's doing... and quite frankly it is driving me up the wall. 

I find that too much protein makes me feel ill... and I'm running out of ideas as to what to eat for snacks... especially snacks that keep me full! I would have a pita bread with peanut butter before and I would be good for hours... well good luck to me now trying to stay satiated for more than half an hour!!!  

I have stopped eating nuts, and I mostly eat veggies, some sweet potato, olive oil... I really don't have much on my list of foods that I CAN eat.. everything bothers me!

manasota Explorer
manasota
Posted

Hi Jane,

Since you mentioned taking "thyroid", I assume you are taking levothyroxine?  If that's the case, you might want to rethink how you're taking it.  Ideal is 30-60 min prior to breakfast.  But also, you need to be aware of diet changes especially within the first 4 hrs AFTER taking your morning dose of levothyroxine.  I take Tirosint and when I stopped dairy (morning yogurt), I failed to take this into account and became hyperthyroid (starving all the time).  Again, when I stopped baking with almond flour & stopped morning muffins, I became hyperthyroid (starving).  We need to watch out for foods with calcium (yogurt, almonds), iron, walnuts.  Changes within the first 4 hrs especially will change your TSH levels.  Not good.  Your TSH varying constantly is going to make you feel CRAPPY!  Just another thing for you to consider.  I know, it really stinks.

Jmg Mentor
Jmg
Posted
 

Yes, that is exactly what it's doing... and quite frankly it is driving me up the wall. 

I find that too much protein makes me feel ill... and I'm running out of ideas as to what to eat for snacks... especially snacks that keep me full! I would have a pita bread with peanut butter before and I would be good for hours... well good luck to me now trying to stay satiated for more than half an hour!!!  

I have stopped eating nuts, and I mostly eat veggies, some sweet potato, olive oil... I really don't have much on my list of foods that I CAN eat.. everything bothers me!

I feel for you. I get down about my own issues but I'm actually very lucky in what I can eat. One of the advanatages of low GI meals is you should't need snacks as much so manasota's post above looks interesting. 

I found this list: Open Original Shared Link How are you with eggs? They're super nutritious and filling. Without omelettes I'd be lost, they make a great wrapper for veggies. Hard boiled they're portable. They're packed with amino acids and protein. 

Avocados are another favourite. A good source of healthy fats. I like baking them with (wait for it...) an egg in the centre.

Good luck :)

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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.