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

Wow! I Never Knew!


Becky6

Recommended Posts

Becky6 Enthusiast

Well, I stumbled across this whole gluten thing because of my daughters awful bm issues. I had her go gluten-free and so many things cleared up! I got my celiac panel done the next week and went gluten-free that night. My tests came back neg. But I have never felt so good after going gluten-free! I never knew that my stomach hurt that badly everyday!! Seriously, I knew I had tummy issues but wow I didn't realize it until I started to feel better! My runny nose and cough are gone, I now realize that I felt foggy or like there was a screen over me and I swear my ADHD symptoms are vanishing! My joint pain and fatigue are also diminishing! Amazing that I have felt that crappy for over 10 years and only after a month of being gluten-free it is clearing up!! I am so glad that I stumbled across this board and that me and my daughter are on our way to mending!!


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Glad you found us, too! Happy to hear you are feeling so much better--brain fog is the worst :)

Guest nini

So glad you found us too and that you can see the visible results of your efforts! It is so rewarding when you realize how much better you feel! Makes all the "sacrifice" worth while!

Becky6 Enthusiast

It is so funny cause I had never heard of brain fog and didn't realize I had it until it is gone! My husband still thinks I am a nut that I am feeling better already but whatever! I don't care what anyone thinks it is worth feeling this good!

jerseyangel Proficient

HaHa--I never knew what it was either. I used to tell the Dr. that I felt like I had a vail over my head constantly and I felt oddly detached from myself. I'm sure they thought I was nuts! It wasn't until I was DX and was learning about everything that I figured out what it was!

kenyan Rookie

Hi guys,

I am still waiting for the results of my blood test (hopefully tomorrow) so I am still eating as per always. I couldn't agree with you more about the brain fog. That and the feeling of total total fatigue (ALL THE TIME) have been crippling for me for more than 15 years and I was getting sick of seeing my doctor becasue I was beginning to feel like I was the problem..... Anyway my wife heard a story on the rqadioi about celiacs and couldn't believe what she was hearing as the ladie was discussing all the same symptons that I have been living with all these years. WELL, hopefully I am about to discover that I am a celiac and that some I will be on the mend.

Once I change my diet to eliminate gluton, can you give me an idea on time frames for feeling better? Thanks so much for listening.

Ta from the land down under.....(Australia)

Jnkmnky Collaborator
Hi guys,

I am still waiting for the results of my blood test (hopefully tomorrow) so I am still eating as per always. I couldn't agree with you more about the brain fog. That and the feeling of total total fatigue (ALL THE TIME) have been crippling for me for more than 15 years and I was getting sick of seeing my doctor becasue I was beginning to feel like I was the problem..... Anyway my wife heard a story on the rqadioi about celiacs and couldn't believe what she was hearing as the ladie was discussing all the same symptons that I have been living with all these years. WELL, hopefully I am about to discover that I am a celiac and that some I will be on the mend.

Once I change my diet to eliminate gluton, can you give me an idea on time frames for feeling better? Thanks so much for listening.

Ta from the land down under.....(Australia)

Even if your tests come back neg., you may still benefit from a gluten-free diet. I did. My tests all came back neg., and I considered the gluten-free diet kind of as an option. The longer I went gluten-free, the worse I felt when I DID eat gluten...even once a month. So, now I'm a strict gluten-free person. The last time I ate gluten, the brain fog made it difficult to care for my kids. That's scary.


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



Celiac.com Sponsor (A8-M):



stef-the-kicking-cuty Enthusiast

Hi Becky and Ta,

welcome to our board. You might have already read it. But just in case you didn't. You can still have celiac, even if the tests are neg. A negativ test can't rule celiac out, but if it's positive, you know for sure, you have it.

Hugs, Stef

Becky6 Enthusiast

My tests were neg but I really don't care! I feel so much better from being gluten-free and will never go back! My daughter also had neg tests and is doing great gluten-free! So even if it is neg try the diet anyways!

jenvan Collaborator

Becky-So glad you are noticing improvement! It is a process for sure. And it is very true that once you find out about Celiac, it seems like a whole new world is opened up to you--that's how I felt. Keep us updated...

Guest nini

I'm glad you've decided to stay gluten free despite the negative tests... ya know, I do believe the positive dietary response is just as valid a diagnostic tool...

I just wish that I had known about this board about 6 years ago. I had been really sick and had several miscarriages, and a friend of mine told me about Celiac. Her mom has it. She said it sounded like what I was describing. I did try the diet briefly at the time, but there wasn't a whole lot of gluten-free options at the time and I didn't have the support network I do now. I also cheated because I wasn't convinced it was my problem. I let my OB/Gyn talk me out of the diet because I was pregnant again and he said that the gluten-free diet was bad for the baby ( :huh: ) Anyway... it took until my daughter was 3 (and after that pregnancy ended up with me being very ill almost dying and being on bedrest and having her a month premature) before I got a Dr. that believed me and sent me to a GI who accurately dx'ed me.

I guess my point is, I applaud anyone who has the strength to stick to this diet without a positive dx. I wish that I had. Although I am glad I do have a positive dx so that I have no doubts.

Becky6 Enthusiast

Now that I know how good I feel while being on the diet I would be crazy to go back to feeling like crap! My body ached so bad I could barely move!! Interesting about your pregnancy Nini-I had a really bad one too. Got pre-e, HELLP syndrome and almost died and had Belle 7 weeks early. Wonder if that was related to gluten?

Guest nini
Now that I know how good I feel while being on the diet I would be crazy to go back to feeling like crap! My body ached so bad I could barely move!! Interesting about your pregnancy Nini-I had a really bad one too. Got pre-e, HELLP syndrome and almost died and had Belle 7 weeks early. Wonder if that was related to gluten?

I'd be willing to bet ya that it was... I had full blown Toxemia, my blood pressure was through the roof and I had gained so much weight, the Dr.s failed to realize that my hips were too narrow for my daughter's head to get through and she got stuck in the birth canal, resulting in an emergency C-section.

Becky6 Enthusiast

Scary!!! My bp was 217/182 on meds!!! They were freaked out at the hospital. They told me not to have another because I have an 80% chance of it happening again. I wonder if being gluten-free will change that??

Guest nini
Scary!!! My bp was 217/182 on meds!!! They were freaked out at the hospital. They told me not to have another because I have an 80% chance of it happening again. I wonder if being gluten-free will change that??

being gluten-free probably would change it, but ya know, I'm too afraid to take that chance. So, it will be only one child for me. I just can't see risking my life for another pregnancy when I've got this kiddo to take care of.

Becky6 Enthusiast

See that is how I think! I am way too scared!!

Guest nini

I am so with you on that one Becky... my mom keeps having dreams about me having another baby and I keep telling her "dream on"... it aint gonna happen!

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,048
    • Most Online (within 30 mins)
      7,748

    Delpickle1
    Newest Member
    Delpickle1
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • tiffanygosci
      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
×
×
  • 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.