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

What Should I Expect


TTNOGluten

Recommended Posts

TTNOGluten Explorer

I am relatively new to this diagnosis over the past 2 1/2 months, and for the first 1 1/2 months probably ingested gluten without realizing it, how frustrating, but over the past couple of weeks I have been what I would consider as being very religious with being strict. I have cross referenced meds, eat very little of anything, checked home products, yet I feel lousy. At best my belly pain is 4/10 constantly but can worsen to 8/10 with burning, knifelike sharp cramps, and mid back pain, and periodic burning. I have read at least 3-4 books which outline the fact that many people feel better within days to 2 weeks of starting the diet, and that is just not what I am seeing. Maybe I am inpatient, but being miserable seems to do that to me rather quickly. I have zero diarrhea which I am happy about, but wonder I guess if these are normal symptoms that I am having. Every other conceivable test has been negative, other than some chronic gastritis on my stomach biopsy. Is there anything to do other than diet to feel better, any treatment to use to try to offset some of these belly demons?? I have taken Zantac for the burning and Nexium peridoically, but nothing touches the cramps, including bentyl or Levsin.

I would love to here any and all recommendations. I applaud all of those posts who are managing to stay positive, I wish I could say the same as this has seriously taken a major toll on my well being


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Hi and welcome! Patience is a virtue here and a necessity. ;) With your diagnosis, it will take time and healing can take up to a couple of years of diligence for severe cases.

I would recommend that you give up dairy products for about three weeks and see if you symptoms improve. Often dairy can have the same symptoms as gluten - has to do with the absorption in the villi that are damaged due to celiac.

Give that a go for a few weeks and then slowly reintroduce dairy. Most times, it's only a temporary intolerance.

mushroom Proficient

I second Lisa's suggestion, and would also suggest that you give your stomach things that are easy to digest. Things like apple and tomato skins, dried beans, and a lot of the gluten substitute foods can be very hard on the stomach, the latter because they are starches you will not have been used to. Go easy on the salads and raw foods at first because the cooked are much easier to digest.

Healing is a prolonged process, longer for some than others, and you do have to be patient and celebrate the small improvements. And it is an up and down process, too -- some days you will feel better than others. I hope you are feeling better soon :)

TTNOGluten Explorer

One thing I still am uncertain about is the gluten component of some skin products like gillette shaving gel and my wife's makeup etc, I am also not currently taking any probiotics or vitamins but I see them listed in many peoples blogs. Any recommendations as far as vitamins or probiotics. I live in a rural area without a lot of access to major health food stores. Again any advice is appreciated, thanks in advance

mushroom Proficient

It's really best if your doctor can test you for any deficiencies. The most common are Vits. D, A, E and K, potassium, magnesium, calcium, iron/ferritin and B12. If testing is not possible, try a sublingual B12 (absorbed better under the tongue, methylcobalamine is best), at least 2,000 iu Vit. D, a good B complex, a multivitamin and a multimineral (or the two combined) -- making sure they are all gluten free. If you can't find any good probiotics, take an acidophilus supplement with a high count (the more 'billions" the better :D ) until you can get some place with a greater variety and then ask for advice. Check for lactose too.

Many of us find initially that we are helped by digestive enzymes too, because gluten depresses the function of the pancreas. Again, you may have to wait until you get to someplace bigger to get these.

Jenniferxgfx Contributor

I had reflux for years and not until I realized I probably had celiac (recently!) did I learn the wonders of pepto bismol. It's not perfect but it really takes the edge off for me. I cant stomach liquid meds, but I take the pills with tons of water and find it helps. Also, insufficient stomach acid (usually from lots of heartburn meds) can feel the same as too much acid, and I think that may have been my issue too. I was on prilosec (or something like it) for 15 years.

Everyone else has great advice too. Dairy, vitamins, and gluten-free dairy-free probiotics. :)

Archived

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

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

    • Total Members
      132,586
    • Most Online (within 30 mins)
      7,748

    Hurricansparkles12
    Newest Member
    Hurricansparkles12
    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

    • Jmartes71
      Shingles is dormant and related to chicken pox when one has had in the past.Shingles comes out when stress is heightened.I had my 3rd Shingles in 2023.
    • knitty kitty
      Here's one more that shows Lysine also helps alleviate pain! Exploring the Analgesic Potential of L-Lysine: Molecular Mechanisms, Preclinical Evidence, and Implications for Pharmaceutical Pain Therapy https://pmc.ncbi.nlm.nih.gov/articles/PMC12114920/
    • Flash1970
      Thank you for the links to the articles.  Interesting reading. I'll be telling my brother in law because he has a lot of pain
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
×
×
  • 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.