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

High Eosinophils

MoMof2Boyz

Recommended Posts

MoMof2Boyz Enthusiast
MoMof2Boyz
Posted

I'm just wondering how many of you, who have had a positive blood test, or endoscopy have/had high eosinophils?

I know it can mean other things but I thought it'd be interesting to see how many have high eosinophils

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

My daughter has Eosinophilic Esophagitus and Celiac. There is a connection between the two (recently reported ?JAMA? October 2011).

JonnyD Rookie
JonnyD
Posted

I've been diagnosed with Celiac and EE too. From what I read, it's more common in boys than girls. In a first attempt to solve the EE, I tried swallowing Flovent for 12 weeks and had some success with it but the symptoms came back almost immediately after stopping the med. But, I'd rather not take a med if I don't have to.

EE is essentially an allergy so I opted to try to find the trigger. I kept a food journal for most of the year so far to determine the trigger for my EE. I was somewhat stumbled onto the trigger - Rice! I read excerpts of several books on food allergies to help come to this conclusion, along with the food journal.

Having celiac and avoiding rice is a real pain but I haven't had any problems since I stopped eating rice and products with rice in them.

MoMof2Boyz Enthusiast
MoMof2Boyz
Posted
  • Author

I've been diagnosed with Celiac and EE too. From what I read, it's more common in boys than girls. In a first attempt to solve the EE, I tried swallowing Flovent for 12 weeks and had some success with it but the symptoms came back almost immediately after stopping the med. But, I'd rather not take a med if I don't have to.

EE is essentially an allergy so I opted to try to find the trigger. I kept a food journal for most of the year so far to determine the trigger for my EE. I was somewhat stumbled onto the trigger - Rice! I read excerpts of several books on food allergies to help come to this conclusion, along with the food journal.

Having celiac and avoiding rice is a real pain but I haven't had any problems since I stopped eating rice and products with rice in them.

really? glad you figured it out! btw, do you happen to remember how high your eosinophils were?

1974girl Enthusiast
1974girl
Posted

Well I have a GIRL with EoE. She will be 12 this month. Her eos count was 46 and she has absolutely ZERO symptoms. But then again she doesn't have any for celiac either. We go back in one week from today to have her 6 month celiac check and then we will decide what to do with the EoE. I have been avoiding all the foods she tested pos. on skin for in addition to gluten. We swallowed Flovent for 8 weeks and quit due to horrible side effects (emotionally crying for hours) This has been interesting because she tested positive to "rice" on skin but the allergist and two different GI docs told me to go ahead and let her have rice. They didn't think it was causing it and it is so hard to be newly gluten free without rice products. So I have been giving her rice. Now you have me wondering! Not to hijack the celiac board but would you scope her if she has no symptoms still????

JonnyD Rookie
JonnyD
Posted

Momof2Boyz:

Sorry, I don't have the eosinophil count. I need to request a copy of my records because I've had that question before. Sorry. I saw images from my scope though and it was textbook EE.

1974girl:

I didn't have any noticable symptoms of EE other than occasional food getting caught in my esophagus (dysphagia). I started with the skin test too and only had celery show up (not part of my regular diet anyway) as the only allergen. I don't know if a skin allergy and EE are the same. I hesitate to give advice and can only say that rice is what I determined after keeping a very detailed food journal for 6 months plus reading on the side. I have no way of knowing if that's the only allergy but eliminating it from my diet has certainly helped. Others with EE have problems with peas, milk, etc... I'd have to be very diligent for a couple weeks and then get scoped to know for sure. I don't know if that's worth the info I get at this time.

1974girl Enthusiast
1974girl
Posted

I know this sounds horrible, but you were kinda lucky you got food stuck. That is a big symptom and you could keep a food diary and find out what it was. She has nothing. No stuck food, no belly pain, no vomiting, nothing. I will have to scope her every 3 months according to one doctor and the 2nd opinion doesn't want to scope unless there is symptoms. We are avoiding all beans, peas, apples, pork, mustard, bananas, cantaloupe, oats, and tree nuts. (This is in addition to gluten for celiac. She tested negative for a true wheat allergy). Anyway, be thankful for your symptom that you could figure out what it was without rescoping a zillion times!

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

Celiac.com Sponsor (A8-M):


JonnyD Rookie
JonnyD
Posted

I know this sounds horrible, but you were kinda lucky you got food stuck. That is a big symptom and you could keep a food diary and find out what it was. She has nothing. No stuck food, no belly pain, no vomiting, nothing. I will have to scope her every 3 months according to one doctor and the 2nd opinion doesn't want to scope unless there is symptoms. We are avoiding all beans, peas, apples, pork, mustard, bananas, cantaloupe, oats, and tree nuts. (This is in addition to gluten for celiac. She tested negative for a true wheat allergy). Anyway, be thankful for your symptom that you could figure out what it was without rescoping a zillion times!

Not sure where you live but Cincinati Children's has a specialty clinic set up for Eosinophilic Disorders and I think they're one of the few that offers this. You can find out more with a quick internet search. My experience has been that GI and Allergy doctors tend to know some info about eosinophilic disorders but not a complete picture. At least I haven't found one yet although I'm not actively searching either. It's a relatively new field and might be worth seeing an expert in this new field. And I share your frustrations on what to feed your daughter. 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 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.