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

Gluten Free And Getting Worse?

utahlaura

Recommended Posts

utahlaura Apprentice
utahlaura
Posted

I was just diagnosed a month ago and have been gluten free of course, but there were still tons of other things I reacted to cause I still needed to heal, I guess. Trouble is, even though I've been gluten free for a month now, a lot of the things I could tolerate a month ago I react to now.....dairy, olive oil, rice, fruit...stuff I could eat before. Now I'm just on a steamed veggie diet and only small amounts at a time. I'm wasting away and just don't understand why this is happening. Aren't I supposed to be getting better??? What's up?

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

Celiac.com Sponsor (A8-M):


mymagicalchild Apprentice
mymagicalchild
Posted
I was just diagnosed a month ago and have been gluten free of course, but there were still tons of other things I reacted to cause I still needed to heal, I guess. Trouble is, even though I've been gluten free for a month now, a lot of the things I could tolerate a month ago I react to now.....dairy, olive oil, rice, fruit...stuff I could eat before. Now I'm just on a steamed veggie diet and only small amounts at a time. I'm wasting away and just don't understand why this is happening. Aren't I supposed to be getting better??? What's up?

Hi, Laura...What a pretty name! You are probably hearing as we speak from one of the experts who monitor this blog. And you should breathe a deep sigh of relief that you found your way here. It shows just how powerful you are.

I had a major event in May of 2007. What I mean by that is: terrible illness, awful symptoms, emergency room at the hospital, no help at all from doctors. I was, however, overweight. It sounds as if you are not.

I immediately went on a 10 day cleansing fast. I went on the lemonade fast and would do it again. But that's only the beginning.

The real problem with Celiac and gluten-intolerance is the months and years that go by where we ignore our symptoms or deny them or treat the "loud" symptoms without recognizing the pattern. In those months and years, the intestinal damage is accelerating. So, Laura, we all have a lot of backtracking to do.

The very first thing I would do, if you are not overweight and cannot fast, is get on coconut oil. 3 tablespoons a day. You'll feel pretty yucky if you really need it because you'll be having candida die-off. Drink lots and lots of liquids and take tinture of milk thistle or its equivalent in water several times a day to detoxify your liver. Maybe you should start the coconut oil with 1 tablespoon a day to see how yucky you feel. Increase the amount to 3 as you can tolerate it.

You need to be on a fiber supplement to move all the toxins out of your system. The one I prefer is Brenda Watson organic fiber bar (available at Whole Foods, otherwise call your nutrition market) because it has half your daily fiber need (14 grams) in one gluten-free bar. You can get the sonne's bentonite clay and drink 3 tablespoons in water every morning. It captures toxins and removes them through your digestive tract, being pushed through by the fiber.

Be patient, Laura. Be persistent. It will take both to heal yourself.

PS: Have you ever seen the movie "Laura"? It's old, but it's really good. The song is haunting. Watching it is like being transported back to another, really lovely era.

mftnchn Explorer
mftnchn
Posted

Laura,

Sometimes this does happen, I noticed something similar. The body makes huge shifts to adjust once we get off gluten. People report increased sensitivities and allergies for months after going gluten-free, and sometimes it gets better and sometimes it doesn't.

Even your veggies may be too much roughage for you right now. What symptoms are you having?

My allergies went a bit crazy too.

It may just be a "hang in there and wait it out" kind of thing. Some people have to puree their food initially.

I'd like to suggest that you look over the information on specific carbohydrate diet. This might help you initially even if you only follow it for a couple of months. You could at least try the intro diet and see if it works better for you. The basic science is that the intestinal damage from the celiac means that we not only don't produce lactase to breakdown lactose in dairy but also don't produce several other enzymes that help us break down carbohydrates. So you eat only carbs that don't have to be broken down. Also only eat things easiest to digest and gradually add other things in slowly.

There are other approaches people here have tried and have worked--mostly their own trial and error. SCD is a structured approach so might be a little easier. Hopefully you'll get many other replies here.

The last thought I have is that there can be something coexisting along with celiac that is upsetting your immune system. I'd go longer with the gluten-free though because it really does take time. It takes adults 1-2 years for the intestine to heal. The allergies are a reflection of the leaky gut caused by the intestinal damage.

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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      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...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      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....
    3. 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!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      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...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • 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

    • 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!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • 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.