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

Turning Point

KristenS

Recommended Posts

KristenS Rookie
KristenS
Posted

Its been 5.5 months since diagnosis, and on a gluten-free diet. It has been a rocky journey. Pre-diagnosis my only symptom was iron deficiency. After giving up gluten I developed stiff joints, severe weight gain, red blotchy skin, acne, crazy food cravings, headaches, and very severe reactions to being glutened (projectile vomiting for 6+ hours). All this while coming to terms with giving up a food group that i loved, and a huge lifestyle change for a young woman living in a big city. Needless to say I have been miserable. I dont even think miserable is an approptiate word to derscribe it. I was furious at my doctor, covinced I would have been better off never being diagnosed, and generally very mad at the world.

 

However, I think I've reached a turning point. I have been able to move my hands and actually hold a toothbrush when I get up in the morning, my insatiable hunger has disipated, my weight seems to be decreasing, and my anxiety seems to be lifting.

 

I know there are a lot of you struggling, and I just want to give you hope that it will get better. It may not be something that you can see day to day, and man can it get worse before it gets better, but things will improve. Its not like taking a pill and having feeling better in a few hours, but it is working. Slowly, but it is. This is by far the hardest journey of my life thus far, but I think I can see the sun shining through the clouds.

 

 

 

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

good for you, honey!  it *is* hard so the sweeter the accomplishment :)  and very encouraging to those who are struggling  - it pays to hang in there.  it really does get better (and easier) :)  great news!

alesusy Explorer
alesusy
Posted

Thank you, Kristen

It's very good news for you and it's so encouraging for everybody else. Personally it's just what I need to hear today!

Gemini Experienced
Gemini
Posted

Good for you, Kristen!  Trust me.....I have been strictly gluten-free for 8 years now and it gets better and better as time goes on.  You will ultimately forget you ever ate that thing called gluten.

Living in a big city?  It ought to be easier for you to find good food to eat.  Cities offer many more options.  Your anger will subside completely once you really start to recover and you'll realize how lucky you were to be diagnosed.  I had severe iron deficiency for years and it nearly did me in as I got older so please believe me when I tell you finding the root cause is the best thing to happen.  This is much better than intestinal cancer from years of being undiagnosed....no one wants to go down that road.

 

Good luck and continued better health.....it took me 3 years to rid myself of all symptoms but it can be done!  You will get there.  :)

cyclinglady Grand Master
cyclinglady
Posted

Kristen, 

 

Thanks for your words of inspiration.

 

Like you,  I only had Iron deficiency when I went for a colon "well-check".  I had been diagnosed some 15 years earlier with Hashimoto's Thyroiditis and that has been acting up for the past year (swinging hyper to hypo).   I never would have guessed celiac disease!  My husband has been gluten-free for  12 years, so I knew the diet.  I had other food allergies so I was little down about giving up gluten.  So, I had six weeks until I could get scoped and I ate bread like a fiend!  I'm talking a loaf a day!  By the end of the six weeks I started getting intestinal issues.  My blood test stated that I has a mild reaction to celiac disease.  By the time I was scoped, the lab results show moderate to severe damage!  

 

I'm five weeks into being gluten-free.  I'm feeling a little stronger so I think the anemia is improving.  But I'm still having intestinal issues.  I've taken to writing down a food/symptom journal to see if I've developed any other allergies (allergic to eggs, milk proteins, garlic, mushrooms and some nuts).  

 

From your posting, I see that I just need to be patient and persevere.  

 

Thanks!

1desperateladysaved Proficient
1desperateladysaved
Posted

Oh, Wow, what you have been through!  I am glad you can see some light.  I hope it continues getting brighter for you!  I feel like making you an I survived T shirt, but perhaps I will leave that for someone else.

 

Meanwhile, keep up the good work and get better soon.  ***

1of6 Newbie
1of6
Posted

Kristen, I too feel like the black cloud around me is starting to lift.  I've been gluten free since mid November and my day does not revolve around food anymore.  I am so glad that you are feeling better as well!  We got this!  On step in front of the other and in no time we will be posting on here and helping all the newbies out. 

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

Celiac.com Sponsor (A8-M):


KristenS Rookie
KristenS
Posted
  • Author

Thank you all for your kind words! I couldnt have imagined going through all this alone, and without the community. We are all a shoulder to cry on, and a hand to life eachother up. I dont know how many times I came searching to find out if I was alone in a symptom or problem!

 

Gemini: The options for gluten-free food (especially gluten-free bakerys at local farmers markets) is great, but the culture of not having a car, buying everything close by, and going out for a lot of meals and social functions is hard. When I live three doors down from a french bakery that I used to buy fresh baguettes at daily, it gets a bit tiresome smelling the ovens baking from your backyard. The culture of eating work lunches out almost every day, and going to restaurants and bars weekly with friends has been the hardest part. The feeling of being left out was one of the things that saddended me the most. But its high time I get over my self pity party, and embrace this s$#&! ;) I think I was making it harder on myself, and I need to get out of that path of self destruction. Last weekend I decided I wanted to eat and drink with my friends, so we had a big Cinco De Mayo party at our house and enjoyed traditional tacos, grilled corn, marguritas, and had a blast. Did anyone notice that everything they ate was gluten free? Of course not, and I certanly didnt hear any complaints!

Now to figure out how to get back into that bikini before summer...

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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
×
×
  • 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.