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JonnyD

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  1. Posting a follow-up on this.  I haven't been on the site for a while.

     

    I recently went dairy free (in addition to gluten free for celiac) and had an almost immediate positive response in my EoE symptoms.  My doctor gave me a recent study on EoE and the two leading allergens by far were identified as wheat and dairy.  I'd been suspicious of other allegens (rice) but don't think I was on the right track as my approach was not a deliberate elimination diet.  It was probably more correlation than causation as the butter/cheese were probably the real problems when I had rice.  I also initially consumed a lot of dairy products when I initially went gluten free which could explain my sudden increase in EoE issues.  For now, I'll be staying dairy free and gluten free until early december when I get scoped. 

     

    For those looking for tips on EoE, I'd suggest starting with eliminating wheat and dairy first.  Of course, you can have multiple allergens but these two categories seem to account for a large majority of the cases. 


  2. I was diagnosed celiac almost 2 years ago now. I recently started generic zoloft (sertraline) at the 50mg level. It's been a couple months and I plan to give it at least a year before deciding to keep it or go off.

    I'd caution you about making too many changes at once. When you do that, you don't know what's causing the effect. Is a bad day from a glutening or a result going off the antidepressant? I'd suggest getting a handle on the gluten free lifestyle first. It took me a good year to be fully comfortable on it.


  3. 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!


  4. 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.


  5. 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.


  6. Judy Splawski is really good. We used to take my oldest daughter to her and were always happy. She's very nice too.

    I too stay away from the Cleveland Clinic. ;)

    JonnyD

    Disclaimer: Not sure if it matters but my oldest did not have celiac but we saw Dr Splawski for other GI issues.


  7. I'd suggest counting calories and/or reducing what you are eating. I've been pretty active for a long time and only recently started dropping weight but it's correlated with fewer calories. Be real careful of portion size and how much you are eating in the process. Even if you are eating the 'right stuff', you won't start dropping if you're consuming too much of it. Try a food journal to keep track, it helps. Good luck.

    JonnyD


  8. I was diagnosed at about the same time and have been gluten free since. I was also diagnosed with Eosinophilic Esophagitis. From what I understand, multiple auto-immune disorders are common. I recently started a food journal to try to figure things out with my diet. It's a bit of a pain but worth it. I found it best to keep a pretty simple diet in the meantime.

    Good luck!


  9. We have a shared house. Our house is full of gluten products. Most dinners are gluten free. We have shared cookware (with some dedicated gluten-free ones too) and it hasn't been a problem. I must react to a higher level of CC. But, I do wash my hands all the time and my wife is good when gluten-free preparing meals. A total gluten-free house just wouldn't work for us right now. For the most part, I'm just really careful when it comes to eating at home.


  10. I was diagnosed with Celiac as well as Eosinophlic Esophagitis (EE). I've been gluten free for almost a year now. But, I've often experienced the throat clogging from the EE. For EE, your esophagus reacts to an allergen in your diet and flares up for 12 days. I've recently started a food journal to see if I can narrow down what's bothering me. If you do ever get a scope and biopsies (the only way to get a 'true' diagnosis), EE's something to have them check for.


  11. Hi, All,

    I hope you can help. I've been gluten free for almost a year but still suffer from an allergy to something(or multiple things?) in my diet. I'm going to have to do an elimination diet soon and am hoping for some advice. Just so you know, I've been allergy tested but those results all came back negative. A strict elimination diet is the only way to determine what's still bothering me.

    But, apparently, an elimination diet means different things to different people and there's a lot of conflicting infomation out there.

    For any who have had success with an elimination diet, can you describe the safe foods you started with and the process you went through to re-introduce/challenge foods?

    Thanks.

    Jonny


  12. You should at least start with allergy testing. EE cases usually do not have postive *allergy* tests. It is a start, and if you do have other true *allergies* you can eliminate those triggers from your overall well-being.

    As for the elimination diet, you start by eliminating all the usual suspects. That is the top 8, peas, and anything you are personally suspecting. It is difficult. You can do it though.

    I ran through it with my daughter when she was diagnosed 3 years ago. All *allergy* tests were negative. The elimination diet took about 2 years, because it was very hard for me to take the chance of adding back the allergens. I just had a hard time seeing her sick. I forgot at what point (on the restricted diet)an additional scope was done to see 100% normal results. She is gluten free for the Celiac and eggs, fish, shellfish, and peas are the identified triggers for her. We have also noticed a seasonal airborn trigger. (Most likely ragweed.)

    Keep a food/weather allergen alert journal. Remember eosinophils once activated, are active for up to 12 days.

    Always try to stay positive and think of what you CAN have. Search for non-food items (cotton candy, dum-dum suckers) and low reactive foods. Popsicles, Slurpees can be very soothing. I have also tried the honey theory. Honey is not supposed to cause reactions, calm inflammation, and the claim of possible helping make a person immune to local airborn allergens. (I'm probably not explaining it well, but at the point of being able to ADD something to the diet was nice. So here goes the explation of the theory... Bees process the local plants pollinating and making honey. Honey does not seem to cause human reaction. The person has a teaspoonfull of local honey a day for at least 3 months. Therefore the person may have exposure without having a reaction and may be able to build up a tolerance for the sensitivity.)

    Watch out for constipation!

    Thanks. I'm going to have to do the Elimination diet. My food allery tests also came back negative across the board but I've been still having problems.

    How did you undertake the elimination diet for your daughter? What foods did you start with and how did you re-introduce other foods? I've seen conflicting information on how to follow this.

    Thanks.

    Jonny


  13. I was diagnosed celiac via bloodtest. During my scope, I found out that I also have Eosinophilic Esophagitis (EE), which is another auto-immune disorder affecting the esophagus. I've read a lot about it and even tried medication with some marginal success. My throat is often 'tingly' after I eat and I've occasionally gotten food caught in it when it's really inflamed. I think I recently stumbled onto the allergy that triggers my EE to get bad - Rice! I've been gluten free for about 11 months now but my throat was really bothered since most of my replacement foods were rice-based. I quit rice a few days ago and have had improving symptoms ever since. I'm hoping this is the culprit since I don't want to have to do a full elimination diet to identify any other potential triggers.

    I'm only mentioning this as a possibility since you specifically mention the throat as a problem.

    You could start keeping a food diary and see if your throat is more bothersome when you eat certain foods.

    Good luck!


  14. I have Celiac as well as Eosinophilic Esophigitis (EE). I went gluten free immediately after I had positive bloodwork for celiac. I've had an overall positive response to being gluten free.

    The EE, on the other hand, has gotten much worse since I overhauled my diet. I've been reading a lot on this and allergies. From my understanding, if you can eliminate the allergen from your diet then the EE should resolve. I suspect that I'm allergic to rice, which would explain how my EE's been worse since going gluten-free as rice-based products have replaced wheat-based products in my diet. I'm hopeful avoiding rice will work for me but I have a feeling that this will be a long process.

    Has anyone else with EE successfully identified the allergen and had their problems resolve? Thanks.


  15. I was about the same size as your son at that age and always short compared to my peers. My parents are nearly as tall as you and your wife but I managed to get to 5'7" but went undiagnosed celiac for many year. I suspect that I would have been another inch or so taller if I was gluten-free in my teenage years.

    I'd suggest letting nature run it's course. He'll continue to grow.


  16. Thanks for the advice.

    I do have a diagnosis for both Celiac and EE. I'll have to look into the elimination diet and see if I can identify the culprit for the EE, if there is one. When diagnosed with both initially, I initially hoped eliminating gluten would fix everything. But, that wasn't the case.

    Gluten-Free has made a hugely positive difference in my life though! The EE is more of an annoyance right now but definitely something I'll try to fix... after the holidays. :)


  17. I was diagnosed with Celiac and EE back in Feb of this year. I obviously went gluten-free right away but chose not to do anything about the EE other than monitor it.

    In the fall, I had an incident where got some meat caught in my esophagus and it prompted me to investigate the EE further. First, I had food allergy testing done but I didn't react to anything. So, I reluctantly agreed to swallow Flovent twice a day for 8 weeks. That definitely worked but caused me to gain some weight as well. But, the treatment ended a couple months ago and I can now tell the EE is back. It sort of feels 'tingly' in my espophagus. I don't want to take Flovent for the rest of my life so I'm just sort of accepting it right now. Not sure what to do otherwise?


  18. I had very positive bloodwork as well as family history so I went Gluten-Free right away. I had a biopsy done a month later but never had any gluten before. My GI said it could take 6 months to a year to fully recover so he wasn't too concerned. My biopsy show some moderate signs but not slam dunk atrophy. It's been almost three months Gluten-Free and I'd never go back on gluten. If Gluten-Free agrees with you, stick with it.


  19. I've been gluten-free for about 2.5 months and plan to have my celiac levels tested again around the six month level. I also had high cholesterol so I'll get that rechecked then too. Since they're drawing blood, I'm going to have my vitamin levels checked, CBC and whatever else the doc will order. I haven't gone to a nutritionist so I'm waiting to see if it's even necessary. Mostly, I want to see how I'm doing on my own after a reasonable amount of time and then seek help in the areas I need to after that.


  20. I'm a 37 yr old guy and have been Gluten Free for 2 months. I got a couple books on Celiac (gluten-free Diet by Elisabeth Hasslebeck and Dangerous Grains) from the library and found that reading about what celiac really means helped me a lot. There's a lot of advice on this blog but it's up to you to accept the diagnosis first. The book by Hasslebeck is a pretty light read. She describes how some people's celiac gets 'activated' or triggered later in life by some event. Others are born with it. Lots of people have it and don't know and just accept that's how life is for them.

    As for me, I'm fit and have been a competitive runner for years. And my 'digestive health' was fine for years too... or so I thought. There are a lot of 'silent' celiacs who don't have over the top symptoms.

    Yes, the tests are accurate. If you have it (positive results), then you really have it. When you understand what it does to your body, even 'just a little' isn't good.

    I think of myself as lucky for knowing that I'm celiac and able to do what's best for my body by not eating gluten.


  21. First off, I'm no professional athlete but have been a runner for 20+ years and pretty fit overall. I've been gluten free for almost 2 months. From what I've read, you should focus on eating mostly whole foods and not a whole lot of the processed "Gluten Free" labeled products. That should help things heal quicker. For me, I saw an easing of symptoms quickly at first and higher energy levels after about a month. I lost a belt size from intestinal swelling that cleared up about a month after I quit gluten.

    From what I've experienced, it's definitely a process and not like flipping a switch. I think being fit will help your intestines heal faster but your body will still need time to adjust. I also found it worth while to check out a couple books from the library on celiac to better understand what's going on.

    From a training standpoint, I've been going easy on myself for the last couple months. I don't know if you have that option or not.

    Jonny