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

New Here!

LandiBear

Recommended Posts

LandiBear Newbie
LandiBear
Posted

Hi there!

I haven't been officially diagnosed with celiac's yet but my doctor's highly suspect it. I had a few questions and was wondering if anybody more wise in the ways of this condition could answer for me.

Sorry if this is TMI but I went without a period for a year and a half. Nearing the end of this period I was getting severe pelvic cramping to the point where I went to the ER and doctors assumed I had cystic ovaries bursting. I was dizzy all the time to the point where I was put on sick leave from work because I looked like I was drunk because my balance was so off. I had extreme trouble focusing on what was happening around me at times.

I was diagnosed with a syndrome called Polycystic Ovarian Syndrome meaning my hormone levels were way off and messed up. This syndrome is highly associated with insulin resistance + diabetes, weight gain, thyroid dysfunction etc. I am completely free of any and all of these associations which has kind of stumped my doctors but I heard that eating low carb was helpful so I cut out root veggies and breads and cereals. I immediately noticed a huge difference in how I felt. My cramping disappeared, I had more energy. I just felt great.

Around this time I had a ultrasound done to check for cysts on my ovaries and I started to have some strange numbness, slight burning pain in my legs, at first I assumed that it might have been a running injury. Then the same pain started to radiate through my left arm and I decided to mention it to my doctor. He was concerned about the risks of blood clots from the birth control pills I was prescribed to control my PCOS symptoms and immediately ran a full blood panel and ordered some other tests.

My results came back that I was very low on B12 and am currently taking supplements. Meanwhile my ultrasounds came back to my OB/GYN who had mentioned that my ovaries were perfect with no cysts (another stumping!) but mentioned that my bowels and small intestine were severely inflamed and there was something going on to be causing me this pain but it was more gastrointestinal. I mentioned my B12 and arm/leg pain and he was the first to mention Celiac's and mentioned that it's likely my arm/leg pain was due to B12 deficiency and nerve involvement and might explain my dizziness and lack of ability to focus.

So I have blood testing set up for next month but I do notice a big difference when I eat breads and stuff. I read an overview of Celiac's online and was intrigued when it mentioned that Celiac's can stop periods. Soo I'm kind of wondering if it's possible that all my symptoms after all this time could be pointing back to Celiac's?

Sorry this is so long! I'm just really curious and was also looking for some direction on how to deal with it. I'm really quite overwhelmed with where to start.. especially with meal planning.. Anyways, thanks to listening fi you read the whole thing.

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

Celiac.com Sponsor (A8-M):


JoshB Apprentice
JoshB
Posted

Can't speak to the female issues, but B12 deficiency is classic celiac. If it is celiac disease, you will likely have a very hard time correcting that with supplements until your intestines are healed. If you are that bad off, I would suggest immediately getting blood drawn. Then, that very day, go gluten free. You can wait for confirmation from the blood tests, but if it is celiac disease and you're at that point you are likely losing nerve and bone tissue every day; you'll have a hard time regaining what you've lost, so don't let it get any worse.

rosetapper23 Explorer
rosetapper23
Posted

If it turns out that you have celiac, it would be wise of your doctor to order B12 shots for you, because you may not be able to absorb B12 naturally for a while. Some of us are on lifetime B12 shots. As for the periods, yes, I oftentimes went for long periods without having them. However, I also had the reverse happen--I bled for two years straight just before my celiac diagnosis. It's all hormonal and can occurred because our small intestine is not absorbing hormones properly.

You sure sound like a candidate for having celiac. I hope you're able to get to the bottom of this and start feeling a lot better soon.

eatmeat4good Enthusiast
eatmeat4good
Posted

The malnutrition can cause you to stop menstruating.

It happens to those with Anorexia too.

The mechanism is the same...the body cannot afford to spend the energy on menstruation when you are completely malnourished. The malabsorption is the problem.

Once you begin healing you should start menstruating again if Celiac is the the problem for you.

B 12 deficiency is very common too.

The dizziness and drunken feeling are associated with the neurological symptoms of Celiac. That too, should resolve when you have been gluten free for some time. Gluten ataxia is when you have balance issues and that too is part of the neurological Celiac. I had the neurological symptoms clear up first. Except for depression and anxiety which took a little longer than the balance issues. Some have found that neurological problems are the last to go.

It's very lucky you had a Dr. mention Celiac to you. You are very fortunate.

As for meal planning, try to keep a lot of meat, vegetables and fruit and nuts around for you to eat. You will need protein to heal. Focus on getting enough protein.

Take vitamin supplements.

Read, read, read about trace gluten and cross contamination.

Rudi's and Udi's gluten free breads are good.

And because everyone needs a treat now and then, you should know that Snickers are gluten free. ;)

Welcome to the board. You will learn a lot here. Stay strict with the diet for a few months and see how your healing goes. If there are any symptoms that do not resolve then they might not be related to gluten.

Hope gluten free is as miraculous for your recovery as it was and is for mine.

LandiBear Newbie
LandiBear
Posted
  • Author

Thanks soo much everyone!

On your advice I'll actually be getting my blood drawn today and restart my Gluten-free diet. I'm pretty good with diet, we usually cook from fresh and very rarely eat pre-prepared foods. My problem is lately with school I'm having a hard time juggling cook time/study time. Sometimes I come home and just have no idea what to make and it feels like no time to make it. I tried meal planners and sharing cooking duties with my fiance but he hates being told what to cook so I'm kind at a loss LOL I just kind of gave up and have been paying for it with pasta and breads and feeling yucky.

I kind impressed upon him the importance of avoiding gluten if this is what I have and he was actually asking questions about what I can and can't have so that gave me some hope.

I've been totally shocked to learn that gluten can be found in seasonings and salad dressings and that has me totally overwhelmed. How I can be sure that something I'm eating doesn't have gluten?

ADDED AFTER - Ok apparently I'll be getting my blood drawn tomorrow. I went to the lab on my way to class and apparently the Celiac test is $125 at the lab but free at the hospital. So I'll be getting my blood drawn at the hospital tomorrow morning. It sucks because I ate a bunch of toast this morning anticipating the test and had to sit through lectures and labs all day feeling completely awful!

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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @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...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      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...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      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...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    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

    • 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 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.