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

Not Better In 3 Months


evie

Recommended Posts

evie Rookie

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


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



Celiac.com Sponsor (A8-M):



jknnej Collaborator

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...

Felidae Enthusiast

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.

Guest mvaught

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

schuyler Apprentice
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

Guest nini

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!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.