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

How Long Will It Take For My Symptoms To Go Away?

laughingchicklol

Recommended Posts

laughingchicklol Newbie
laughingchicklol
Posted

I have been gluten free for six months, I started when I learned I had it. I went to the doctors originally because of extreme weight lose and a lot of other stomach problems. I started being gluten free from day one, but I continued losing weight, I have been admitted to the hospital twice because my weight was too low and finally I had a feeding tube put in to help get the massive calories it takes to gain weight. I have had it for four months now and have gained ten pounds. It almost seems impossible to gain weight. I know it is not because of frequent bowel movements because I have very bad chronic constipation, I have to do a home enema every other day just to go. Why haven't I gotten better? My stomach problems got so bad I can't eat food orally so I am completely dependent on the tube feeding, so I know I have been gluten free for four months but it seems like my absorption hasn't gotten better. It takes 3000 calories for me to maintain my weight of 100 pounds.

It took forever to get diagnosed. I have had the celiac blood test several times but they all came back negative, I didn't get diagnosed until I had a biopsy done. Could I have a misdiagnoses.Is it normal to take this long to get better?

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

Celiac.com Sponsor (A8-M):


Bryce Newbie
Bryce
Posted

Your symptoms sound very severe, i was diagnosed at 13, during this time till my early 20's i found it impossible to gain weight. Later finding out that i was very intolerant to dairy, mainly milk and cheese. Once i had figured that i was feeling much better but the weight gain didnt come till i hit about 22-23.

I think you really need to get yourself checked out again, maybe by another doctor. Also, go see a dietitian as they can help a lot!

Best of luck!

Eilidh Newbie
Eilidh
Posted

Hey laughingchicklol,

My heart just went out to you when I read this post, that is an awful experience!

I have known that I was celiac since I was 12. I was never an unhealth kid, but I had stomach problems and skin rashes mostly. When I went gluten-free, hardly anyone knew what gluten was, let alone what it was in! So, I got a ton of cross-contamination, and was still sick for at least 2 years.

Now, most of my family has dicovered that they are celiac, and my mom runs a gluten-free bakery. She has had to learn a lot about celiac disease and because of my own interest in it, I have done quite a bit of research as well. What I have learned is that it takes a while for your gut to heal, before it can start digesting again. It sounds like you were effected pretty badly, so it might take you gut longer to heal. I'm not a doctor, I am only 17, but I hope that you know that things will get better. I have met hundreds of celiacs now, and not one that I have talked to has said that they feel worse when eating gluten free. Some have said that they dont feel any better, or they dont notice a difference, and almost everyone says they feel great...but it always takes time.

I really hope that you start to feel better, and I wish I could be of more help. Seeing another doctor would be a very good start, ask if they have any more suggestions or tips or new research to help you out. I always suggest to other celiacs to do as much research as you possibly can, the more educated you are, the more you can help others.

Good luck!

Eilidh

  • 3 weeks later...
Live Love Twillight Rookie
Live Love Twillight
Posted

I have been gluten free for six months, I started when I learned I had it. I went to the doctors originally because of extreme weight lose and a lot of other stomach problems. I started being gluten free from day one, but I continued losing weight, I have been admitted to the hospital twice because my weight was too low and finally I had a feeding tube put in to help get the massive calories it takes to gain weight. I have had it for four months now and have gained ten pounds. It almost seems impossible to gain weight. I know it is not because of frequent bowel movements because I have very bad chronic constipation, I have to do a home enema every other day just to go. Why haven't I gotten better? My stomach problems got so bad I can't eat food orally so I am completely dependent on the tube feeding, so I know I have been gluten free for four months but it seems like my absorption hasn't gotten better. It takes 3000 calories for me to maintain my weight of 100 pounds.

It took forever to get diagnosed. I have had the celiac blood test several times but they all came back negative, I didn't get diagnosed until I had a biopsy done. Could I have a misdiagnoses.Is it normal to take this long to get better?

I am so sorry about your condition-no, it normally does not seem to take so long to get used to the gluten-free diet. i am not sure about the weight loss-when i was younger i was diagnosed with type one diabetes. My symptoms, and common ones are weight loss, frequent urination, being super hungry and thirsty, and a lot of being sort of down, maybe dizzy. When you have type one diabetes, a common follow up disease is Celiac disease. that is in my case. All i can say farther is that maybe you have sum other allerigies like tree nuts or lactose. if u r getting fed threw a tube, idk wut to say about alleregies. Sry, hope this gets better.

ie99 Newbie
ie99
Posted

have you considered anything else, such as crohns disease? I remember someone telling me they hay had crohn's and had to eat over 4000 calories to gain weight due to malabsorption.

GFinDC Veteran
GFinDC
Posted

There is a condition called refractory celiac, where they immune system doesn't seem to know how to back off when the gluten is removed. You could have that I suppose, but it is supposed to be very rare. Have the put you on any immuno-suppressants? That might help if you are still producing antibodies. I am not a doctor either but my brother had both Crohn's and celiac. Some people on the board had both celiac and microscopic colitis. It is not impossible to have 2 conditions at the same time. Has your doctor done a follow up endoscpoy yet? It seems like they would want to check the condition of your gut to see if there has been some healing since going on the diet.

I hope things get better for you soon and you get some answers. :)

lizzy951 Newbie
lizzy951
Posted

It took me about three week to get used to it

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.

Go to topic listing

  • 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. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    3. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    4. knitty kitty
      - 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.

      @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...
    5. Jane02
      - 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.

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

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

      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?
×
×
  • 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.