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

Still Sick


hez

Recommended Posts

hez Enthusiast

Hi I am fairly new to the board and was looking for support. I was diagnosed in April with celiac disease through blood work and endoscopy. I have been gluten-free since April and still not feeling 100% better. The gi doc thought this was not unusual since I have extensive damage. The doc looked at 10 inches of my small intestine and not a vili in sight! Just wondering if anyone else had similar damage? How long did it take you to feel better?

Hez in CO


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



Celiac.com Sponsor (A8-M):



higgins Newbie

hez: Mine was a rather late diagnosis; I had lost over 90 lbs. and almost had to be hospitalized. Since diagnosis, any exposure to gluten will make me sick for about 3 weeks.

It may take time to get rid of the gluten in your diet - the stuff shows up in the craziest places. I was diagnosed 2 years ago, and still have problems with exposure, especially the airborne stuff.

In my case, other things may also cause similar (and therefore misleading) symptoms. I will get celiac disease-like symptoms (weight loss, diarrhea and cramps, etc.) if I'm exposed to lactose, or if I am dehydrated - easy to happen. Keep track of what you eat; you might be getting gluten from some obscure, easy-to-overlook source.

Also, it was reported on this website recently that celiac disease may be accompanied by any number of other intolerances (lactose, citrus, etc.) so it may be advisable to look into those issues as well. I know that whenever I get a rumbling in the stomach, or cramps, my first impulse is to drive myself crazy trying to recall if I could have taken any gluten; however, the symptoms may actually be from a lactose reaction, or other non-celiac disease intolerance.

Richard

lovegrov Collaborator

My villi were flat. Iwas hospitalized and missed 10 weeks of work. Four months after starting the diet I was working but doing little more. It was about 10 months before I felt "normal" again.

richard

KaitiUSA Enthusiast

Took me about 8 months to feel normal but I felt quite a bit better after the 3rd month. If you feel some better then that should be encouraging. If it has gone years and years with accumulating damage then for some people it can take a few years to really get back to normal.

hez Enthusiast

I am just happy to know that I am not the only one! I have good days and bad. This just happens to be a bad day. Feeling sorry for myself and depressed. Thank you.

PicturePerfect Explorer
I am just happy to know that I am not the only one! 

<{POST_SNAPBACK}>

Although I was diagnosed a month after you, I barely had any damage - in fact, the doctor could not tell if I had Celiac or not, so they had to take a sample. Anyway, I am feeling a little better, but not 100% as well.

Hope you feel better soon!

Lisa

SueC Explorer

Hi hez,

I was also diagnosed in April and am not nearly ready to say I am 100%!! I am definately alot better than I was and I am encouraged by that, but still have alot of things that have not gone away completely. I guess it just takes time for our bodies to heal....Hopefully they will soon :) Hang in there!


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,005
    • Most Online (within 30 mins)
      7,748

    Peg55
    Newest Member
    Peg55
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • 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.