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

Newly Diagnosed


Kimberly9489

Recommended Posts

Kimberly9489 Newbie

Hi Everyone,

I am newly diagnosed and have gone gluten free for about a month. When I was diagnosed with Celiac I was shocked because I really didn't have blatant symptoms. I have been gaining weight over the last few years and couldn't understand why because I eat a healthy balanced diet. My doctor did a very thorough blood work, tested me for hypothyroidism and Celiac. To my horrific surprise I was positive for both. He informed me that eating gluten was no longer an option for me, any my hypothyroidism is a result of gluten intake. Since going gluten free I feel as though Pandora's box has opened. I felt fine the first two weeks but now I am having intermittent issues of constipation, sandy, grain-like loose stools, stomach sensitivity etc. To make matters worse, I accidentally ate something with gluten last night and paid a serious consequence of diarrhea, with stomach cramping. What is going on? zI never had any of this before going gluten free! It is hard enough transitioning to such a strict lifestyle but I feel worse now, than before when I was eating gluten. Has anyone else had a similar experience? The other question I have is: Does anyone have any idea how long it takes to recover from being glutened?


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



Celiac.com Sponsor (A8-M):



MitziG Enthusiast

Good for your doctor! Everything you are going through is very normal. When you remove a toxic poison from your diet, your body notices!

It can take awhile for things to resolve. Stick to whole foods diet for a few months- stay clear of gluten free processed foods for now.

Digestive enzymes can help get your gut bacteria back in harmony.

As for reacting to gluten now when u didn't before, also common. Your immune system is recovering enough to make a stronger stand against what it sees as poison. It is actually a good thing- but it doesn't feel very good!

So, get a bottle of Braggs Apple Cider Vinegar and keep it on hand for accidental glutenings. A tsp in a glass of water gives you serious pain and nausea relief!

Also, educate yourself about how to be gluten free- it is a learning process! You need to toss plastic ware, wood utensils and scratched enamel and teflon cookware- it holds gluten. You need a new toaster and cutting board and will need to do a deep clean of your kitchen. Avoid restaurants for now, the risk of cross contamination is very high and when you are trying to recover you really don't need the setback of accidental glutenings!

Lastly, spend time here. You will learn LOTS!

GladGirl Rookie

Welcome to this board. I also am relatively newly diagnosed, although about 2 months ahead of you. There is much research being done concerning the fact that about 30% of Celiacs experience weight gain instead of weight loss, which you and I have both experienced. Most Dr's look for the weight loss before they even think about testing a patient for this disease...sadly that is still a prevalent note.

I do not at this time have any problems with my thyroid, however, my liver and gallbladder took the huge "hit"! There are many other symptoms I have had, but not ones that "screamed" test me for Celiac. If my Uncle had not been diagnosed, and my brother having similar symptoms, the connection to a hereditary disease probably would not have been made...and I would still be in so much agony.

My first week of being gluten free was amazing! And like so many have said, "clean the kitchen" ridding any gluten exposure! Oh, and NO processed foods and lots of liquids to flush this poison out. I lost 11 lbs that first week! I attribute that loss to the edema and inflammation build up in my body being "flushed" out of my system. Since then I have lost about one lb per week, now at 20 lbs lost...with another 20 to go to be at my goal. I am not starving either!! Before being diagnosed, I really fought weight gain and literally felt I had to starve myself to lose a pound. Now, I understand why. There is a great article on this site by a young woman who experienced the same symptom. Surprised the Dr too! It seems our immune system is so "whacked" that it can tell our body to store fat because it is fighting the gluten and will need that extra storage for the battle. Also, the inflammation in our joints and muscles is a normal reaction in that fight! I also had "frozen shoulder" which has totally abated at this point and my liver enzymes are almost completely normal!!

Give yourself time and patience. Think about how long your cells in your body have been fighting and taking a beating! I kind of thought about this diet as one being similar to a baby trying to digest in their new system. So "babied" myself...soft foods are easier to digest, use your blender to make veggie and fruit "shakes". Eat yogurt as a natural probiotic if you are not lactose intolerant, everyday. Make sure you have some type of vitamin supplement going on as well. Nature Made are gluten free. I added Vitamin B12 sublingual to my daily supplements along with Vit C, Omega 3, Multiple Vitamin without IRON because my ferritin level is somewhat high, I also added Calcium because my Uncle who was Celiac developed Osteoporosis.

I don't overdue on the excercise yet. My poor joints and muscles really took a beating! Now, I have noticed my skin is "sagging", so I really need to work on that. OH, and vitamin D...I take some sun every few days for the natural absorption and really careful not to take too much.

Wishing you well on this new journey...we have much to do!! :)

beachbirdie Contributor

Welcome to this board. I also am relatively newly diagnosed, although about 2 months ahead of you. There is much research being done concerning the fact that about 30% of Celiacs experience weight gain instead of weight loss, which you and I have both experienced. Most Dr's look for the weight loss before they even think about testing a patient for this disease...sadly that is still a prevalent note.

I do not at this time have any problems with my thyroid, however, my liver and gallbladder took the huge "hit"! There are many other symptoms I have had, but not ones that "screamed" test me for Celiac. If my Uncle had not been diagnosed, and my brother having similar symptoms, the connection to a hereditary disease probably would not have been made...and I would still be in so much agony.

My first week of being gluten free was amazing! And like so many have said, "clean the kitchen" ridding any gluten exposure! Oh, and NO processed foods and lots of liquids to flush this poison out. I lost 11 lbs that first week! I attribute that loss to the edema and inflammation build up in my body being "flushed" out of my system. Since then I have lost about one lb per week, now at 20 lbs lost...with another 20 to go to be at my goal. I am not starving either!! Before being diagnosed, I really fought weight gain and literally felt I had to starve myself to lose a pound. Now, I understand why. There is a great article on this site by a young woman who experienced the same symptom. Surprised the Dr too! It seems our immune system is so "whacked" that it can tell our body to store fat because it is fighting the gluten and will need that extra storage for the battle. Also, the inflammation in our joints and muscles is a normal reaction in that fight! I also had "frozen shoulder" which has totally abated at this point and my liver enzymes are almost completely normal!!

Give yourself time and patience. Think about how long your cells in your body have been fighting and taking a beating! I kind of thought about this diet as one being similar to a baby trying to digest in their new system. So "babied" myself...soft foods are easier to digest, use your blender to make veggie and fruit "shakes". Eat yogurt as a natural probiotic if you are not lactose intolerant, everyday. Make sure you have some type of vitamin supplement going on as well. Nature Made are gluten free. I added Vitamin B12 sublingual to my daily supplements along with Vit C, Omega 3, Multiple Vitamin without IRON because my ferritin level is somewhat high, I also added Calcium because my Uncle who was Celiac developed Osteoporosis.

I don't overdue on the excercise yet. My poor joints and muscles really took a beating! Now, I have noticed my skin is "sagging", so I really need to work on that. OH, and vitamin D...I take some sun every few days for the natural absorption and really careful not to take too much.

Wishing you well on this new journey...we have much to do!! :)

GladGirl, do you happen to have the name of that thread about fighting to lose weight, or a link to it? I'm really struggling right now! Gluten free for only 3 weeks. It used to be that if I changed my diet, I could lose 6 pounds of water weight almost instantly. This time around, the first time I've ever gone truly gluten free, I am still quite swollen, and can't seem to lose an ounce. I have not replaced my gluten with "gluten-free" products, but have gone to very little grain at all. I'm so frustrated. And so hungry!

Sorry to interrupt the thread...

GladGirl Rookie

GladGirl, do you happen to have the name of that thread about fighting to lose weight, or a link to it? I'm really struggling right now! Gluten free for only 3 weeks. It used to be that if I changed my diet, I could lose 6 pounds of water weight almost instantly. This time around, the first time I've ever gone truly gluten free, I am still quite swollen, and can't seem to lose an ounce. I have not replaced my gluten with "gluten-free" products, but have gone to very little grain at all. I'm so frustrated. And so hungry!

Sorry to interrupt the thread...

Here is the link to her story....also if you google obesity and Celiac Disease many other studies about this will come up to read...

https://www.celiac.com/articles/1033/1/Celiac-Disease-and-ObesityThere-is-a-Connection-by-Melissa-Croda-q/Page1.html

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
      133,329
    • 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
      @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.