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

Seriously, How Long Is This Going To Take?

LoriG

By LoriG
in Coping with Celiac Disease

Recommended Posts

LoriG Contributor
LoriG
Posted

Hello-

I have been gluten-free 3 months and dairy free 6 weeks and seriously, I am not that much better! My ND says it can take anywhere from 9 months to 2 years for the gut to completely heal.

This is an extremely difficult diet to follow especially since I'm not feeling better. I would be so much more motivated if I felt better!

I must say the constipation is better, but I think that was related to a magnesium deficiency along with celiacs.

My BIGGEST complaint is chronic fatigue and irritability, which I have suffered for years and years. I also am hypothyroid and I know that is playing a part, too. Hoping gluten-free will help my thyroid in the long run.

Please offer some encouragement so I keep going! I feel like I am suffering with no end in sight.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Were you diagnosed with Celiac, and if so, how?

Lisa Mentor
Lisa
Posted
Hello-

I have been gluten-free 3 months and dairy free 6 weeks and seriously, I am not that much better! My ND says it can take anywhere from 9 months to 2 years for the gut to completely heal.

This is an extremely difficult diet to follow especially since I'm not feeling better. I would be so much more motivated if I felt better!

I must say the constipation is better, but I think that was related to a magnesium deficiency along with celiacs.

My BIGGEST complaint is chronic fatigue and irritability, which I have suffered for years and years. I also am hypothyroid and I know that is playing a part, too. Hoping gluten-free will help my thyroid in the long run.

Please offer some encouragement so I keep going! I feel like I am suffering with no end in sight.

Hey Lori,

If you have been totally gluten free for three months, you should be seeing some healing effects.

Have you check you cosmetics, shampoos, toothpaste, meds, supplements, i.e. anything that can get into your mouth.

Do you share a toaster, gotten new wooded spoons, have a clean chopping board, replaced your scratched non-stick pots and pans? Do you share a mayo jar, butter, peanut butter or other condiments with non celiac people?

If you do have a Celiac diagnoses and need to go gluten free all these things should be look into.

Sublinqual B-12 (it desolves under your tongue) helped me alot with the fatigue.

helenabbadi Rookie
helenabbadi
Posted

Don't give up, although I can relate. I've been gluten-free and CF for about 5 months, I'm still having lots of problems. I never thought my irratability was ever gonna go away. It took about 4 months for my irratability to finally subside! So don't give up, and hope you feel better soon!

jerseyangel Proficient
jerseyangel
Posted

Hi,

I would tend to agree with the recommendations that momma goose offered.

I'll add that it took me about 4 months to turn a corner--so to speak. That was for the GI and neuro symptoms. The fatigue and anxiety took quite a bit longer--probably 18 months or more. At the 2 year mark, I felt substantially better.

Try and hang in there--the fatigue is a tough one. :)

mftnchn Explorer
mftnchn
Posted

Hi Lori.

You might want to check out the lyme disease thread, as symptoms can be quite similar.

Also, yes it can take a long time it seems. I am over 6 months and still very much up and down. It is nice when it it a cut and dried answer, but it isn't always.

Soy definitely causes abdominal symptoms for me, I am better GFCFSF.

mamaw Community Regular
mamaw
Posted

Hello

I wish I could say everything will be fixed by going gluten-free but that is not always the case. I agree it can take 6months to two years or more .... but you must remember you didn't get to this point overnight either so it does take alot of time for our bodies to heal.. Please don't give up because all of a sudden you will start to notice changes when you least expect it......

The hypo can play a big part in this picture..... I almost died because of hypo thyroid & not being treated correctly... It has caused my heart to go into A-Fib & after several years of sickness I'm on beta-blockers & ect.I found out it is nothing to play around with.. so also treat the thyroid issue as well...

B-12 has been a big help to me. I also drink the ready made Kombucha tea from Whole Foods. It gives me energy & a feel-good feeling ....

You will get better & I'll say a prayer that it comes about soon.

mamaw

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

Celiac.com Sponsor (A8-M):


LoriG Contributor
LoriG
Posted
  • Author

Thank you everyone for your speedy reply!

It sure helps to hear I am not alone and this does take awhile. I have 2 friends who also said it was at least 6 months before they felt better. Yikes!

To answer some questions: I am being careful about cc as best I know how. I was diagnosed by enterolab and I will check out the lyme disease info. My 2 biggest symptoms of fatigue and mood stuff seems to be what takes the longest to get rid of!

Thank you for your encouragement.

bakingbarb Enthusiast
bakingbarb
Posted

I am in the same boat. I feel better in all ways except fatigue. When I walk up my stairs I have to sit down. UGH :(:angry: It does make me sad and angry at the same time. I used to think I was wonder woman. We have a family, I garden, I bake, I do all the cooking and most of the cleaning and I worked. Now I am preparing to go back to school for a year or so. I need to be able to walk into that college and be able to make it up the darn stairs!

All of my other symptoms have cleared, thankfully the brain fog too. That was the worst and also one of the fastest ones to leave. But this being tired is beyond anything I have ever felt.

Oh and the 18th was one month for me!

hathor Contributor
hathor
Posted

It can take longer than three months (or six weeks depending on how you look at it). Sometimes I think it takes longer for those of us on the C side to heal than those on the D side. But that may well be selective perception and memory on my part. I do remember asking and being told by a number of C folks that they started seeing improvement around three months. But since dairy is such a constipating factor, you are only at 1 1/2 months.

You've already been asked about gluten CC. I assume you have been carefully reading labels to make sure there is no casein or caseinate ingredient? Sometimes these things get added into items that folks normally wouldn't view as dairy, such as "lactose free" nondairy cheeses.

You could have a third intolerance. Soy seems to be a common third one. You could do a two-week trial without it and see how you feel. Or if symptoms come and go, keep a diet/symptom journal (assuming you don't already) and see if you can discern any patterns.

Try to stay the course. It is frustrating that it takes so long to heal. I sometimes felt like it must be something else, because eliminating the intolerance items didn't make me feel perfect right away. But then I would accidentally get some of them and feel even worse and realize, nope, I have problems with these things all right :o

Offthegrid Explorer
Offthegrid
Posted

I second trying to go off soy.

I felt better only a few days once off soy, but have been having some minor relapses here and there from accidentally eating soy. It's in a lot of stuff!

hathor Contributor
hathor
Posted

I just remembered that some believe soy can have harmful effects on the thyroid. I don't know that there is a consensus on this and I've never researched the possible link. It may be something for you to look at, as well as other foods that have been linked by some to poor thyroid functioning (like cabbage, Brussels sprouts, and millet, in addition to soy) -- if you haven't already. It certainly won't hurt you to do a trial without soy and see what happens.

Or you can get the Enterolab soy test.

LoriG Contributor
LoriG
Posted
  • Author

Thanks again for the tips.

Yes, I have read a lot about soy, too, but honestly I mentally cannot handle cutting that out, too. I don't have symptoms that come and go so it is hard to determine a pattern. I watch my soy consumption because of my thyroid.

Yes, I am watching ingredients as far as dairy. I have a friend allergic to dairy so she's been very helpful.

I think I have accepted that this is a long healing journey and being only 3 months isn't really that long since I believe I had this my whole life. I will continue to be patient....

Archived

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

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

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      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?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.