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

New to the gluten free life, please help!

amyesnipes

Recommended Posts

amyesnipes Newbie
amyesnipes
Posted

Hi everyone! I am completely new to gluten free living. 

I have severe hypothyroidism, fibromylgia, an anxiety/depression disorder and some other smaller problems. Through research I have found that gluten can attack the thyroid and cause fibro and depression symptoms to worsen. I went gluten free last Monday. My main question is how long does it usually take to start feeling a difference? Is it different for everyone? I was gluten-free for 5 days and then slipped up and had a good amount of gluten this weekend. I now am very itchy and have a very upset stomach. Could these be from the gluten even though I have only been gluten-free for 5 days? 

 

Thanks for the help!!!!

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Recovery times vary, and we all have slips in converting the the gluten-free lifestyle. I went five years with overt symptoms before diagnosis. After going gluten-free I continued to have symptoms for 4-6 months, while my intestines healed. 

cyclinglady Grand Master
cyclinglady
Posted

Welcome.  A gluten free diet has been reported to be helpful for those with autoimmune issues like thyroiditis, but I would encourage you to get tested for celiac disease first.  It might be the root cause of many of your symptoms but you need to be consuming gluten for tests to be accurate.  Learn more about testing: 

Open Original Shared Link

and the reasons why....

Open Original Shared Link

 

Ennis-TX Grand Master
Ennis-TX
Posted

I second cylinglady on the getting a offical diagnosis if you have not already for celaic or at least getting tested. Do it now before going completely gluten-free. The testing requires that you be consuming gluten, not much just a cracker a day or half a slice of bread for about 12 weeks prior to a blood test and  2 weeks for the endoscope.

On other notes welcome to the forums lets start with a bit of a introduction guide for you to read over, https://www.celiac.com/forums/topic/91878-newbie-info-101/

Now lets see if we can not address some of your concerns, the anxiety and depression could in fact be made worse if you have nutrient absorption issues. I might suggest getting checked, common ones are B-vitamins, Iron, Niacin, Vitamin D and E, Magnesium, and a few others. We are each different in ones we end up with issues with and have to work with a dietician about balancing it out. You will probably have to take supplements for these for awhile if any are the issue. B-vitamins, magnesium, and calcium can be huge issues with the anxiety and depression department. I might also suggest taking a digestive enzyme and probiotic if you have fibo.

We normally suggest a whole food diet for those who are diagnosed with celiac for the first few weeks or months to help jump start the healing process. I will also share some other products, and links for replacement foods, places to shop, and listing of UPC codes and how to get them from either your local grocer, the company themselves, or a online retailer like thrive.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

As we are all different you might comeaccross other things you react to like oats, or other grains, or have odd intolerance/allergies develop. A food journel will be a life saver for eliminating and tracking these down if they develop. Just write down what you each day and note how you feel, like your gut, mind, energy, etc. afterwards for a few hours. You might find some odd patterns, that will help you build a diet.

Jmg Mentor
Jmg
Posted

Hello and welcome Amy, you've found a great site!  :)

12 hours ago, amyesnipes said:

Could these be from the gluten even though I have only been gluten-free for 5 days? 

Yes, that reaction could be a sign that gluten is an issue for you.

I'll third what CyclingLady said above. I'm sure you're anxious to keep the diet going to see if its the source of your problems, but now is the time to get a definitive answer as to whether you're celiac or not. It's a lot harder once you've been off for awhile, but that's what you'd need to do to get tested. Ask for a full celiac panel blood test and make sure you keep eating it every day till the results are in and you've discussed them with a doctor. They may want an endoscopy to confirm.

Once tests are complete then give the gluten-free diet a try REGARDLESS of whether your diagnosed celiac or not. I was negative for celiac but gluten free has resolved many issues for me including anxiety and depression.

Best of luck!

 

Specialguest Newbie
Specialguest
Posted

You really need medical advice. Any significant changes in diet should be approved by a doctor. Gluten is not evil. Most if us here have a disease that prevents us from eating it, among many other difficulties.  Go get checked out.

My gi recognized my celiac disease during a routine endoscopy. All following tests confirmed it. Go get tested. It really is very easy.

Gemini Experienced
Gemini
Posted
On 3/13/2017 at 5:34 PM, Specialguest said:

You really need medical advice. Any significant changes in diet should be approved by a doctor. Gluten is not evil. Most if us here have a disease that prevents us from eating it, among many other difficulties.  Go get checked out.

My gi recognized my celiac disease during a routine endoscopy. All following tests confirmed it. Go get tested. It really is very easy.

While it is always better to have an official diagnosis, unless you know nothing about nutrition, you don't need a doctor's advice or approval to eat gluten free.  The dietary change is not that significant, unless you survive on fast food and cupcakes. It only requires that you eat healthy and the vast majority of healthy, whole foods are gluten-free. There is also good gluten-free bread that is nutritious to replace the gluten filled stuff we can no longer eat.......in fact, a lot of regular bread is crap and offers little in the way of real nutrition.

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

Celiac.com Sponsor (A8-M):


amyesnipes Newbie
amyesnipes
Posted
  • Author

I just left the Dr's office. He said he doubts my symptoms are related to gluten....supposedly I have too many ailments for them to be linked to gluten. He didn't even want to do the test. I love my Dr, he has been amazing up until now. 

Should I go ahead with the gluten free diet to see for myself if it works for me? It's s healthy lifestyle anyway right?

Thank you all so much for your input. I greatly appreciate all the help!!!

cyclinglady Grand Master
cyclinglady
Posted

You can go gluten free, ( I would with hypothyroidism and Fibro), but seriously, I would get a second opinion.  Why are you hypo?  Did your doctor run a thyroid antibodies test?  Does he/she know anything about celiac disease?  I just took my FIL to his doctor and she was clueless about celiac disease!  Okay she mostly see geriatric patients, but you can develop celiac disease at any age!  

Celiac disease affect many body systems:

Open Original Shared Link

I like my Internist and my daughter's doctor, but both are clueless about celiac disease too.    My Internist in all fairness works with over 2,000 patients.  She can not know everything!    I also find that if you document your request in writing, doctor's tend to respond better.  Yep, a letter works.  If your doctor is wrong and you have celiac disease, you have a leg to stand on.  

amyesnipes Newbie
amyesnipes
Posted
  • Author
On 3/17/2017 at 3:15 PM, cyclinglady said:

You can go gluten free, ( I would with hypothyroidism and Fibro), but seriously, I would get a second opinion.  Why are you hypo?  Did your doctor run a thyroid antibodies test?  Does he/she know anything about celiac disease?  I just took my FIL to his doctor and she was clueless about celiac disease!  Okay she mostly see geriatric patients, but you can develop celiac disease at any age!  

Celiac disease affect many body systems:

Open Original Shared Link

I like my Internist and my daughter's doctor, but both are clueless about celiac disease too.    My Internist in all fairness works with over 2,000 patients.  She can not know everything!    I also find that if you document your request in writing, doctor's tend to respond better.  Yep, a letter works.  If your doctor is wrong and you have celiac disease, you have a leg to stand on.  

Thank you for the advice. He did do the blood test for my thyroid so hopefully he can get that on track. I was diagnosed about 5 years ago and still have not gotten my levels right. 

I'm going to ask around to see if anyone I know has a Dr that knows about celiac's. 

Gemini Experienced
Gemini
Posted
On 3/18/2017 at 3:35 PM, amyesnipes said:

Thank you for the advice. He did do the blood test for my thyroid so hopefully he can get that on track. I was diagnosed about 5 years ago and still have not gotten my levels right. 

I'm going to ask around to see if anyone I know has a Dr that knows about celiac's. 

I have both Celiac and Hashi's and the comment about you having too many symptoms for it to be Celiac means you need a second opinion, no matter how wonderful your doctor has been to you.  That is the very definition of a Celiac....someone who appears to be falling apart with a number of seemingly unrelated symptoms.  Not to mention they have failed to get your thyroid balanced in 5 years?  That probably means you are not absorbing your meds correctly so your thyroid will remain wonky until you absolutely rule Celiac in or out.  If after all testing things are still inconclusive, then I would go on a strict gluten-free diet and see if it helps.  But you have to give it at least 6 months.

I was diagnosed with Hashi's at least 15 years before the Celiac.  My thyroid was never right until I went gluten free. I kept needing higher and higher doses, because my intestines were becoming more and more damaged.  Don't let that happen to you!

amyesnipes Newbie
amyesnipes
Posted
  • Author

I'm sorry you had to go through that! It is so frustrating. Thank you for your suggestions. I'm going to get a second opinion. 

Jmg Mentor
Jmg
Posted
On 3/17/2017 at 7:01 PM, amyesnipes said:

He said he doubts my symptoms are related to gluten....supposedly I have too many ailments for them to be linked to gluten.

As others have said as Celiac affects the auto immune system it can present in a lot of different ways or none, here's a short summary:  Open Original Shared Link and here's a much longer list of associated conditions:  Open Original Shared Link  It would be easier to list things that it can't affect! :D

Again, once testing is complete, even if negative, please give the gluten free diet a proper chance. 

Best of luck to you :)

 

Gemini Experienced
Gemini
Posted
22 hours ago, amyesnipes said:

I'm sorry you had to go through that! It is so frustrating. Thank you for your suggestions. I'm going to get a second opinion. 

Yeah...me too but it was all a learning experience.  Mostly I learned to not completely trust doctors because, unless they have Celiac themselves, they really don't fully get it.  They just don't read the obvious signs people show.

Let us know how it all works out and good luck!

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. 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...
    2. 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...
    3. 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.