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

Need Help / Advice - Think I'm Celiac

Shadowmaru

Recommended Posts

Shadowmaru Newbie
Shadowmaru
Posted

Hi all, I think this all started about 8 years ago and has gone undiagnosed since then as IBS.

 

For about 8 years, I have had constant chronic headaches, every day of my life, it's been hard but i'm used to them now, and always bowel issues. Well this year I have had a lot more problems; Headaches are worse Stomach ache Lots of acid/indigestion Extreme fatigue Constipation & Loose stools Burping & out of the other end frequently (sorry) Bloated feeling (kind of alien shape belly) Vomiting after eating Stool covered in mucus And a few more...

 

I didn't know about Celiac disease until I had my recent blood test after complaining to my Dr. I asked the nurse what he ahs checking for and she said Celiac disease, so I have come to this forum after looking on Google to see what it is all about. I beleive it's an auto-immune disorder? And having this condition can increase your risk of other auto-immune diseases? the only reason I ask is because I suffer from Pericarditis, for the last 3 years, which is an auto-immune disease, so I am wondering if there is a connection in terms of Celiac disease and this? Not sure.

 

I have always wondered why I vomit after drinking beer too, which made me stop a long time ago. I can't even have a pint without feeling really sick or actually vomiting, so I never touched it since, in about 8 years.

 

I went to a Golf day yesterday, the meal came and it was a carvery, bloody lovely too, it contained: Chicken, Gammon & Beef, with potatos, yorkshire puddings, and a load of Gravy. Well, about 30 minutes to an hour passed, and my stomach was absolutely killing. I didnt sleep a wink last night, I was dehydrated, my head was banging, and I had acid in my throat, and needed to be sick or go to the toilet. This lasted all night, and i'm in work now, had to use the toilet this morning, it wasn't pleasant, I still feel really sick, tired & weak at the moment, it's a horrible feeling.

 

I have sandwiches next to me (bread) and other food which contains gluten, but i'm really not sure I should eat them just in case. I'm sorry this is long, but i'm at a xroads right now and don't really know what to do because I dont know much about the disease, i'm just in a lot of pain. So... After all that, my question is, does it seem like I could be Celiac, or something else? Thanks, Shadow.

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

Celiac.com Sponsor (A8-M):


Shadowmaru Newbie
Shadowmaru
Posted
  • Author

Well I got my blood tests back, I don't know if anyone can understand these but the nurse told me I need further bloods in a month due to my "Serum ALT" showing as 71 when it should be 30-35... No idea what this means.

 

There was also no proper Gluten tests done either, it's just your normal routine one with a couple more thrown in... Although my Serum Urea level is high and all my Haemoglobin levels are higher than normal. I dont know if this is related.

Cara in Boston Enthusiast
Cara in Boston
Posted

You need to get the proper tests done - there is a whole panel of blood tests needed.  Make sure you doctor doesn't skip any.  Also, you need to be eating a regular diet until the testing process is over.  It took several months for my son and several weeks for me.  Do not go gluten free until you are done with testing.

 

While you are waiting, find out if your family has a history of autoimmune disorders (they all seem to be related) and if others have issues like IBS or the like.  (many are misdiagnosed and are really gluten intolerant).  Take some time to figure out recipes and meals that you will like when you finally are able to go gluten free.

 

When testing is done, even if it is negative, try eating gluten free for three months.  The tests are not 100% accurate and even if you do not have celiac, you could still be gluten intolerant.  If your symptoms improve, you will have your answer.

Shadowmaru Newbie
Shadowmaru
Posted
  • Author

Thank you for the reply.

 

My sister was diagnosed with IBS, and my mother, and I was as well, so there is a connection there.

 

I have eaten some gluten foods this morning, and now my stomach is twisting, but not so bad, maybe it will affect me more later.

 

Although I feel like I could fall asleep at any moment, but this maybe due to severe insomnia last night, which I believe is a symptom of Celiac Disease ?

kenlove Rising Star
kenlove
Posted

glad you found it posted!

good luck!

 

Thank you for the reply.

 

My sister was diagnosed with IBS, and my mother, and I was as well, so there is a connection there.

 

I have eaten some gluten foods this morning, and now my stomach is twisting, but not so bad, maybe it will affect me more later.

 

Although I feel like I could fall asleep at any moment, but this maybe due to severe insomnia last night, which I believe is a symptom of Celiac Disease ?

Shadowmaru Newbie
Shadowmaru
Posted
  • Author

Thanks Kenlove.

 

I'm now having hot flushes and feel quite sick, burping a lot, and a little bit of acid/sick in my throat.

 

I am hoping it's Celiac so I can at least do something about it.

 

Having a chronic headache for 8 years has been no fun,

kenlove Rising Star
kenlove
Posted

I only hope you can  turn this around quickly, I was glutened by accident this week for the first time in years.   Had forgot how miserable it is. Good luck

 

Thanks Kenlove.

 

I'm now having hot flushes and feel quite sick, burping a lot, and a little bit of acid/sick in my throat.

 

I am hoping it's Celiac so I can at least do something about it.

 

Having a chronic headache for 8 years has been no fun,

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

Celiac.com Sponsor (A8-M):


Shadowmaru Newbie
Shadowmaru
Posted
  • Author

Ah damn, that must have felt quite horrible..

 

Just out of interest, what was your symptoms / how long until they came on etc?

cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Here is a link to the University of Chicago's celiac website. It contains the list of blood tests and discusses the 300 or so known symptoms of celiac disease:

Open Original Shared Link

Keep eating gluten until all testing has been completed! Take care.

kenlove Rising Star
kenlove
Posted

with me its been pretty fast -- sometimes befoer I leave hte restaurant  -- not a pretty site.  lasts  about  3 days

 -- i hope you dont have to go through that  but afriad  every celiac does at some point.

good luck

Ah damn, that must have felt quite horrible..

 

Just out of interest, what was your symptoms / how long until they came on etc?

Shadowmaru Newbie
Shadowmaru
Posted
  • Author

I have been eating as normal, to make sure I don't mess the test up, but it's hard. I'm also keeping a diary of what I eat and the symptoms...

 

But I am suffering for it right now. I ate before some things on a Pitta Bread.

 

30 minutes or less later:

 

Stomach Cramp, Dizzyness, Hot Flashes, Fatigue (Nearly fell asleep), Headache, Brain Fog, Bloating and then followed by Loose Stools, most stopped after 2 hours, except for the headache and stomach cramps.

 

The hot flashes are so strong though, it literally feels like lava coming from my chest to the top of my head, it's quite bizzare.

 

Stomach ache/cramps is still there though, I have had that all day.

 

So I have a month of this at least until we do more bloods.

 

Damn :-(

 

edit to add: I have just read as well, if diagnosed over the age of 20, you have a 36% chance of developing other auto-immune disorders... This for me would be my other two conditions:

 

Geographical Tongue

Pericarditis

 

Life's good!

ravenwoodglass Mentor
ravenwoodglass
Posted

Call your doctor's office and ask if you can pick up a script or have them call in the order for the full celiac panel. Ask to speak to a nurse and read her off the tests you need done. Tell her also how bad you are feeling and about the new or worsening symptoms. Tell them how badly it is impacting your ability to work. If you can get a short term medical leave you might want to consider it. 

You do sound like you could be one of us and hopefully you can get in sooner than a month to have the blood work done. 

While you are suffering though the wait do be sure to read as much as you can and ask any questions you need to. Oh and feel free to vent if needed. 

I hope you get answers soon and start feeling better.

 

PS  I have never had another migraine since about a week gluten free (unless I get glutened) Hope the same goes for you. 

Seeking2012 Contributor
Seeking2012
Posted

I have been eating as normal, to make sure I don't mess the test up, but it's hard. I'm also keeping a diary of what I eat and the symptoms...

 

But I am suffering for it right now. I ate before some things on a Pitta Bread.

 

30 minutes or less later:

 

Stomach Cramp, Dizzyness, Hot Flashes, Fatigue (Nearly fell asleep), Headache, Brain Fog, Bloating and then followed by Loose Stools, most stopped after 2 hours, except for the headache and stomach cramps.

 

The hot flashes are so strong though, it literally feels like lava coming from my chest to the top of my head, it's quite bizzare.

 

Stomach ache/cramps is still there though, I have had that all day.

 

So I have a month of this at least until we do more bloods.

 

You need to have these tests done:

 

Endomysial Antibody

Tissue Transglutaminase Antibody (tTG)

Immunoglobulin A

 

I recommend that you print that out and take it to your nurse/doctor/whoever and tell them that is what you want done. If they refuse or hem-haw around as they already have done, get another doctor. Those are the tests you need to answer your question of whether or not you have Celiac, and I think you do have it. Let us know what happens.

nvsmom Community Regular
nvsmom
Posted

The DGP IgA and DGP IgG are also great tests to get done.

Shadowmaru Newbie
Shadowmaru
Posted
  • Author

Thanks guys, i'm going to call them tomorrow as I can't put up with this, it's terrible... I think i'd end up about 7 stone if I did this for a month !

 

Can I ask, what's the DGP igA and DGP igG test compared to them others as Seeking2012 said ?

 

Over the weekend I went to Tesco (UK supermarket) and down the isle, there was about 80 different variations of cereal, and only 1 box was Gluten Free...

 

Anyways, I ate it, and I was perfect! No stomach ache, headaches, vomiting etc, it was great !

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,142
    • Most Online (within 30 mins)
      7,748
    KP009
    Newest Member
    KP009
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
×
×
  • 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.