Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

What Is Happening To Me?

HappyMommy

Recommended Posts

HappyMommy Newbie
HappyMommy
Posted

First time on this site, very informative, so glad to be able to reach out like this...

Here goes,

I have had stomoch issues on and off for about 10 years, never really thought to much about it until I had my son 4 years ago. That is when I started feeling really bad. Started out having what I was told were gall bladder problems. I had every test under the sun and they all came back "looks good, not problems". So then the pain in my joints started. It was then thought I had arthritis, not the case, tests were normal. The pain is still there to this day. Sometimes it is worse than others but still there non the less. I have some mornings when it takes me a few minutes to get out of bed because I hurt and am stiff all over. Mostly hits me in my back, knees and ankles. When I get really flarred up, my fingers hurt to move. So, next comes my stomach bloating and burning feeling under my ribs. I never know when it is going to happen, seems mostly at night. I will be awakened sometimes with a stomach ache. My sides will feel like I am being pinched inside, stabbed even. It seems mostly on my right side. I sometimes feel like a baloon is blowing up. I have been told I had kidney stones also, but I didn't. Sometimes my tummy looks like I am pregnant. Now I am a large girl anyway so most of the time my doctor says to lose weight and exercise. I am all for that but when I try to work out, I feel worse. My body just aches all over. I can make it through my days and get done what I have to but I am so tired and worn out all the time. I am not the person I was 4 years ago. I have been so anxious and then depressed at the same time wondering what is happening to me? Is this how it is going to be? I don't remember what it is like to "feel good".

I have since had another child, what I find interesting about that is I have read that people with Celiac can have issues with their babies. My daughter was born full term at 4 pounds 13 ounces. All kinds of tests were done and no one seemed to have any explanation. She is fine, thank God! I guess if I am not absorbing what I should be, neither was my daughter.

I have found out that my Grandmother was a Celiac. I didn't know that until just a few weeks ago. That is when I started to research on this disease. I had no idea what it was. I read some message boards and it is like I am reading about myself. I can't think straight half the time, I used to be so quick whitted, that is gone. I feel like I have gum in my brain, it just seems so slow. My work is starting to suffer as well.

I just had the blood test done after telling my dr about this. She seemed reluctant to hear me about all this. She said she thinks I have IBS and Post Partum Depression.... I just think there is something more to what is happening with me. I am so afraid to hear her say they found nothing.

I am starting to feel like maybe everyone is right, I am fat and lazy and need to get off my butt.

I have decided that if the blood tests show nothing, I will just put myself on the diet and see what happens....

Has anyone else had this happen? Could there be something more than IBS here? Am I just nuts like it seems everyone thinks?

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

Celiac.com Sponsor (A8-M):


mama2 Apprentice
mama2
Posted

Welcome! You will find great suport here!

I too HAD a lot of unexplained symtoms ... unexplained prego problems left unanswered. since going gluten-free this summer I am feeling much better no more GI problems my aches have too gone away... I also have a family history of it. I had inconclusize biobsey results (could not rule in or out celiac). I finally just went on the diet ... went in to see my doctor for stange skin rash and he gave me some stuff to help with the itch and said it would not hurt to gluten-free and sent me on my way. within 3 days I started to notice a difference ... GI symtoms stoped. I figured trying a gluten-free diet could'nt hurt. Glad I did.

tom Contributor
tom
Posted
Has anyone else had this happen?

Could there be something more than IBS here?

Am I just nuts like it seems everyone thinks?

Yes

Definitely Yes

&

Definitely No

IBS is a symptom, which does have a cause. And you'll find the cause.

"If the blood tests show nothing" go gluten-free? Why wait?

I think you may have crossed a threshold by posting your 1st post. Many here 1st took control of their own health by doing the same.

The diet itself is a test as much as the blood, the endoscopy and the rest.

Why wait to start it? Did you have much gluten today?

You sure don't need to have celiac disease to feel much better off gluten.

I don't want to oversell it but there IS a chance you'd feel better next wkend than you have in years.

Run the test. Go 100% gluten-free . . . .. .. Staaaaaarting . . . . ... . ..NOW!! :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Your story and symptoms and the progression you have so far seen are going to be familiar to a lot us. I have to agree with Tom, I would try the diet strictly for a while and see if it helps. Blood tests and endoscopies can give false negatives. Your body will tell you clearly though, in most cases, after you have been off it for a while and then challenge. It is also a good idea to cut dairy out also for the first couple of months or so and then add it in and watch for a reaction. You have come to a great site for info and support, feel free to ask any question you need to no matter how 'silly' or 'gross' you think it may be. You may also want to check out the Celiac Sprue Associations website they also have some good info and a dietary guidelines page that I think is one of the best.

blue angel Rookie
blue angel
Posted

Your symptoms sound very similar to mine and yes i feel like i'm going insane too.

I was diagnosed with IBS 4 years ago and only recently my doc asked me if i had ever been tested for celiac disease,only because all the meds under the sun hadn't cured my so called IBS. Needless to say i had blood tests and it came back positive. I then underwent a gastroscopy/ biopsy of my stomach lining to confirm it. I have been waiting over a month for the results but all i get is "we're still working on it". What is so complicated about finding out what a person can and can't eat for goodness sake. Like you i am in constant pain, tummy looks like a 6 mth pregnancy, itchy forehead severe joint pains, tingly hands and frequent hard motions, sometimes discoloured :unsure: I am also dehydrated even though i drink enough. The problem i have is i can't take gluten out of my diet because they may need to repeat the biopsy as they only got two samples and needed 6. I have however booked with my GP tomorrow and if i don't get anywhere then i am going to take matters into my own hands as it's my body they are messing with and i don't want it past irrepairable. Good luck with your investigations and try to stay positive. :)

HappyMommy Newbie
HappyMommy
Posted
  • Author

Thank you guys for replying... I think that is the validation that I needed. I am not going to wait any longer. I will change my diet and see what happens. It is sure a lot better than doing nothing and having people tell me nothing is wrong... :D

mama2 Apprentice
mama2
Posted
Thank you guys for replying... I think that is the validation that I needed. I am not going to wait any longer. I will change my diet and see what happens. It is sure a lot better than doing nothing and having people tell me nothing is wrong... :D

Your gut feeling does'nt lie... happy eating... gluten-free that is!

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

Celiac.com Sponsor (A8-M):


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 Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip. The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all. Nothing budged. I tried Milk of Magnesia...
    2. Manaan2
      - Manaan2 replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

      @knitty kitty The information you've provided is invaluable! I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!). This weekend my husband and I plan to solidify all the details for a start point, then adjust as...
    3. BIg Nodge
      - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information. I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS...
    4. Dawn Meyers
      - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too. I was supposed to do testing to find out metal's I was allergic to because I can't wear jewelry of any kind. Mayo felt I had other allergies also.
    5. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,855
    • Most Online (within 30 mins)
      7,748
    Tuba1971
    Newest Member
    Tuba1971
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
×
×
  • Create New...