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

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

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

JonnyD Rookie

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

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

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

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

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

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.

  • 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. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    3. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    4. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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! 
×
×
  • 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.