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 Celiac.com!
    eNewsletter
    Donate

Not Better In 3 Months

evie

By evie
in Coping with Celiac Disease

Recommended Posts

evie Rookie
evie
Posted

I have been diagnosed by camera in intestines to be celiac but biopsy shows not celiac Have in testinal damage, have been on gluten free diet for 3 months with little improvement. Need help to cope/ shakiness, weakness, sore joints, belly aches and diahrrea!! Am so glad many of you have come past this stage and hopefully waiting for that day to come, I am sure it will. Keep up the good work for yourselves and others.

Love to all, evie

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jknnej Collaborator
jknnej
Posted

Hi Evie,

Keep up the good work. You can do this! We all did and although it is hard you will look back on these first few months later and be so proud of yourself.

And, you will feel so much better!!! We're here for you...

Link to comment
Share on other sites
Felidae Enthusiast
Felidae
Posted

It could take several more months for you to feel better. You may also have to think about removing certain foods while you are healing, such as dairy and/or soy. It will get better.

Link to comment
Share on other sites
Guest mvaught
Guest mvaught
Posted

evie,

chin up - you'll get better in time. it took me a few months to feel okay after going gluten-free. I was bloated and C for quite a while (which I have discovered it the after-reaction to getting accidentally glutened...forst D and all of the other symptoms - fatigue, joint pain, headace, etc. then bloating and C for about a week or two). So don't get discouraged....I know it can be frustrating to still feel bad when you are doing everything right - but you'll make it through. Yes, and as the others said - watch out for other allergies/intolereces like dairy, etc. Just when I thought I had it all figured out, i discovered that dairy is bad bad - at least for now (some people find it bad for a while and then are okay with it later). So, just hang in there, you'll see inporvements in things you didn't even know were a problem - my skin, hair and nails are all of the sudden so much better than they were before (my hair use to fall out in clumps and my nails were very brittle)...I use to think that it was just normal for me, but apparently it was just the celiac me. Just stick with the gluten-free...it can be hard sometimes to watch other eating pizza and the like (especially when you are not feeling better yet) - but every second of temptation and annoyance it worth it!! You will get better.

cheers,

Michelle

Link to comment
Share on other sites
schuyler Apprentice
schuyler
Posted
I have been diagnosed by camera in intestines to be celiac but biopsy shows not celiac Have in testinal damage, have been on gluten free diet for 3 months with little improvement. Need help to cope/ shakiness, weakness, sore joints, belly aches and diahrrea!! Am so glad many of you have come past this stage and hopefully waiting for that day to come, I am sure it will. Keep up the good work for yourselves and others.

Love to all, evie

I'm in a similar situation. I was diagnosed 3.5 months ago and I am feeling no better than before. I actually got so sick on Sat from a really small glutening that I spent the day in the er because I was so dehydrated, shaky, and I kept passing out. All that I know is that we just need to hang in there and stick with the diet. I heard that aloe vera juice is supposed to help soothe belly aches. I'm not sure if it's true or not, but I'm going to buy some tomorrow and try it (it's worth a shot). For the diahrrea, the doctor at the hospital gave me a perscription for an anti-diahrreal med that he said he has given to other celiacs and has helped them. Well, when my mom went to get the meds, she noticed that it had wheat in it! So, there goes that! I hope that the other celiacs that he has given the meds to look at the ingredients. It's sad that a doctor who supposedly knows a lot about celiac, is giving celiacs a medication that has wheat in it. I was really looking forward to finally having some relief from D, but I guess I'll have to keep searching for something. I'll let you know if I find anything that helps with any of the symptoms. Good luck and hang in there.

Danielle

Link to comment
Share on other sites
Guest nini
Guest nini
Posted

I didn't really start to feel better until about six months into the diet... also, I had to give up dairy for a while too, in the beginning because your villi are flattened they cannot absorb lactose, therefore most celiacs are lactose intolerant UNTIL the damage begins to heal. My GI reccommended staying off dairy as well as gluten for at least 6 months.

Also, at this stage you are still learning the diet, there is probably still some hidden gluten in your diet or in your personal care products, yes even shampoos and lotions matter... anything you touch with your hands has an opportunity to make it in your mouth without you noticing it... (touch hair with hands then eat something... it only takes a molecule of gluten...) anyway... also any of the gluten-free specialty products are even harder to digest inititially. It's better to stick with a diet of foods that are naturally gluten-free. Fresh fruits and veggies, clean meats and other proteins, simple grains like rice and quinoa...

hang in there!

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...