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

Need Help With How I Am Feeling...

blondebombshell

Recommended Posts

blondebombshell Collaborator
blondebombshell
Posted

went to the GI doc yesterday and he has me scheduled for an endoscopy for 3 weeks from now. he told me to get back on gluten to see if when they do the endo if they will be able to tell what my stomach/intestine look like.

as a result of adding this back into my diet i have ITCHY hives everywhere on my calves. could this be DH?

i have never had these itchy bumps. just constipation which caused me to go off gluten, thinking that after having a blood test indicating that i was gluten intolerant that maybe that was it. now that i am putting it back into my diet after being off of gluten for 1 month, i cant handle this!

do you think its celiac? do you think it could be something else?

thanks so much

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
went to the GI doc yesterday and he has me scheduled for an endoscopy for 3 weeks from now. he told me to get back on gluten to see if when they do the endo if they will be able to tell what my stomach/intestine look like.

as a result of adding this back into my diet i have ITCHY hives everywhere on my calves. could this be DH?

i have never had these itchy bumps. just constipation which caused me to go off gluten, thinking that after having a blood test indicating that i was gluten intolerant that maybe that was it. now that i am putting it back into my diet after being off of gluten for 1 month, i cant handle this!

do you think its celiac? do you think it could be something else?

thanks so much

You are showing a positive reaction to the challenge. That is diagnostic for more intelligent doctors. Your body liked being gluten-free and now it is showing you how much it liked it. Many of us have C for years as the body tries desperately to draw nutrients into our system through an intestine that is not functioning normally. Eventually your intestines will be damaged enough for episodic D and then a life sitting on the toilet. Whether you continue with the challenge is up to you. I still feel it is barbaric for doctors to demand that we make ourselves extremely ill just to 'prove' we have a problem with something that has progressed far enough to cause permanent (at times) damage. If they can use a gluten suppository and biopsy of cheek or rectum in other countries I don't know why they can't do that here, oh wait, yes I do. An endo requires an invasive procedure in a facility with lots of cash going into their pockets, a noninvasive biopsy can be done in office with a local and only regular staff with no OR.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted

I had an itchy rash/hives thing on my upper leg and my ankles when I was at my sickest. It certainly does sound like celiac disease to me. I can't imagine having to go back to eating gluten again. Thankfully I had all of my tests done before going gluten free and feeling better. Good luck!

blondebombshell Collaborator
blondebombshell
Posted
  • Author

wow - i told him that i had itchy hives after eating some bread once and he didn't say anything. he said that since this is 'sudden,' like i have never had issues with the hives or not that it could be allergies.

my whole life i had issues with going to the bathroom. i only go about once a week if i am lucky. that is why i went to the doctor in the first place (the regular doc) and he did some blood work. this indicated that i had a gluten and egg white allergy. that was it. he said, well try a gluten free diet, lol.

i took it a step further and made an appt with a GI doc and now i have these bumps from time to time and i am assuming that they have to do with the gluten.

he told me that a gluten free diet is hard to stick with and it is expensive. whatever i guess, right!

Jestgar Rising Star
Jestgar
Posted

The diet ends up being a lot cheaper than all the prescription meds you have to take to control all the symptoms.

Archived

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

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


  • Member Statistics

    • Total Members
      127,859
    • Most Online (within 30 mins)
      7,748
    Lilac41
    Newest Member
    Lilac41
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • 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...