Ee Not Celiac But Still Frustrated And Confused

[Sarahsmile416]

My doctor (well her nurse) called yesterday afternoon and left this very convoluted message saying I had esophagitis but there was no evidence of celiac. You would think I would be relieved, but instead I am more frustrated and concerned than before.

First of all, there was inflammation of my intestines - was that all caused by the esophagitis? I doubt it...different systems. Second, and more importantly, so this gives me an answer for my acid reflux but my greater concern was my constant C and D, not to mention headaches, slight rash and intensely itchy skin...and I still don't know what the cause of this is. I would feel better if my doctor told me to make a follow up appointment but there was none of that...just take this medication we give you and go on your merry way. Well, no, I don't work that way!

They are sending me the results in the mail so I will put them on here when I get them, but it just seems awfully quick turnaround for an endoscopy that was this past Wednesday the 19th, which makes me suspect some kind of weird problem.

Ideas? Advice anyone? I am so confused!

[kareng]

That is fast for a pathology report - maybe. If the pathologist gets to it right away, it is possible. The results were likely sent electronically so that saves a day or two. I'm wondering if your doc actually biopsied your small intestine? I guess you will see when you get the report.

[Sarahsmile416]

I hope she would have!! I really dislike waiting until after the new year to see the report, but at the very least, I am going to call my doctor next Wednesday to see if she can say anymore than the nurse did on the phone.

Beyond that, I have heard that EE can be connected to allergies and that sort of thing, so I am going to go gluten free for a while and see if that helps my symptoms. Beyond that, I don't know what else to do

[mommida]

OK

EE is a lot more confusing than Celiac. (This is the opinion of a mom of a Celiac who also has EE)

The medical standard for an Eosinophilic Esophagitus diagnoses. Is a referal to an allergist. Modified Flovent inhaler (so the patient swallows steroids) and some Previcid.

If you are lucky enough to have something show up in your allergy tests it can help identify some "triggers". In most cases there is no conclusive results from allergy testing, because it is not a true allergy. You may have to do an elimination diet. This is best to avoid the top 8 allergens (wheat, eggs, dairy, nuts, treenuts, fish, shellfish and soy) and peas. (This could be part of the Celiac EE connection as gluten may be your "trigger")

Some product lines that are helpful for this elimination diet...

Enjoy life

The Cravings place (if this is still available)

my favorite cookbook is The Allergen Free Baker's Handbook by Cybelle Pascal. (you can use any gluten free flour substitute mix check to see if you need to add the xanthum gum)

Liz Lovely cookies (online ordering, pricey, but they have some gluten free, vegan varieties.)

Look into non-foods and least likely reactive foods for some safe substitutes while your diet is this restricted.

Keep in mind there is also a connection to airborne seasonal allergies. & Once activated an eosinophil is active for up to 12 days. So your challenges to the elimination diet is going to be on close to a two week calendar.

The elimination diet helped identify my daughter's triggers and she has not needed to be on a feeding tube. Keep a journal during this time. We have indeed noticed there is a seasonal allergy connection. (late summer early fall is a bad time of year and we wait it out until a deep freeze of winter.)

So many here are ready and waiting to offer help. We will find you something to eat! Or support you when you can't. Some "tubies" (feeding tube individuals) have other forums too.

[mommida]

Ok forgot to add.

There is too strong of a connection to parasites and eosinphils. You should definately be tested for parasites when there are high levels of eosinophils. (You could find the cause and cure very easy. This would be best case scenario.)

The symptoms are identical for a Celiac being gluttened and EE. (I'm not 100% positive about your rash though. Different vitamin and mineral defiencies can cause skin problems. malabsorbtion can cause extremely dry skin (which could be almost immediately be looking like contact dermatitus) Zinc defiency can cause acne around the mouth especially.

[Sarahsmile416]

Thanks for the help and the links, mommida. I asked my stepfather (a doctor) and he said basically the same thing - to do an elimination diet and get some differential diagnoses from my doctor regarding my presenting problems (C and D). Bottom line, I need more information and I'm not getting it. I do think regardless that sometimes you just need to do your own work to figure things out.

It's going to be a long road back to help, but you all have already helped me so much!!

[mommida]

Another important thing. Most of these reactions are from proteins (protein chains).

If getting enough calories and nutrition becomes an issue, there are amino acid formulas available.

The strangest thing is how many (pediatric) cases PEAS are a trigger. So watch out for some of the gluten free products that use pea starch for thickener/binder.

My daughter was diagnosed about 4 years ago. It was a pretty bad situation, she was close to needing a feeding tube. Using the elimination diet to find the triggers was the key to keeping her healthy.

My heart really goes out to you. I got to be my daughter's crutch and learn what was safe and do the research for her. (Logically because she was only 6.) She needed time just to heal, not have to deal with anything else. I've got 4 years experience, if you need help I'm here.

[Sarahsmile416]

Another important thing. Most of these reactions are from proteins (protein chains).

If getting enough calories and nutrition becomes an issue, there are amino acid formulas available.

The strangest thing is how many (pediatric) cases PEAS are a trigger. So watch out for some of the gluten free products that use pea starch for thickener/binder.

My daughter was diagnosed about 4 years ago. It was a pretty bad situation, she was close to needing a feeding tube. Using the elimination diet to find the triggers was the key to keeping her healthy.

My heart really goes out to you. I got to be my daughter's crutch and learn what was safe and do the research for her. (Logically because she was only 6.) She needed time just to heal, not have to deal with anything else. I've got 4 years experience, if you need help I'm here.

I could definitely see it becoming an issue...the nutrition and the calories. How do you find the amino acid formulas?

Well , today was a good day...I went gluten free and had no reactions for the first time in two or three days. However, nutrition and calories were an issue...too little protein I fear.

I really appreciate all the help and support. Going at this basically blind is pretty tough. I think it will be interesting (albeit frustrating) to see what I will and won't be able to eat.

Your daughter has a real advocate in you, that's for sure!!

[mommida]

The amino acid drink boxes for kids were called Splash. I'm not going to lie to you, they taste like crap! If you can figure out non reactive foods for you to make a smoothie or plug your nose and drink it as fast as possible. They put artificial sweetners in it, and we can't stand those. Maybe that's why we thought they were so horrid.

I found them on-line they are expensive. If you had a good day gluten free, I'm hoping you don't need them.

Well, MERRY CHRISTMAS!

Or Happy, Merry, Warmest Wishes for whatever holiday you celebrate! or you are least offended by.

[Sarahsmile416]

The amino acid drink boxes for kids were called Splash. I'm not going to lie to you, they taste like crap! If you can figure out non reactive foods for you to make a smoothie or plug your nose and drink it as fast as possible. They put artificial sweetners in it, and we can't stand those. Maybe that's why we thought they were so horrid.

I found them on-line they are expensive. If you had a good day gluten free, I'm hoping you don't need them.

Well, MERRY CHRISTMAS!

Or Happy, Merry, Warmest Wishes for whatever holiday you celebrate! or you are least offended by.

I will check them out just in case - thank you! For me, the problem is (and I suspect for your daughter as well, maybe ) is even when I don't get the C+D, I am still getting a lot of abdominal discomfort due to the heartburn and reflux. I would prefer that to the C+ D any day, but it's still unpleasant. It's going to be a bit until I am able to get the aciphex that the doctor prescribed. Although, I may ask her to call it into a pharmacy where I will be staying so at least I can take something that actually works! Taking tums does nothing'

I feel like I picked the worst time to start this diet because my husband and I are traveling to Florida for a week and then going on a cruise. But I'm trying...at least I am finding out what I can eat at different restaurants even if at some I am limited to yogurt and corn lol. (Thanks, Cracker Barrel! )

Anyway, out of curiosity, which foods did you end up having to cut out of your daughter's diet?

So, from what you said, going to an allergist would be useless because its not a true allergy??

A very happy holiday to you and your daughter! I hope it's a wonderful one!!

[mommida]

In addition to gluten, it is fish, shellfish, eggs, and peas.

The abdominal pain and severe daily headache is also from the EE. Younger patients don't even really complain about the throat or chest.

If an allergist can help you avoid anything that isn't helping, it will be worth it. Don't be surprised if nothing comes up though.

It is going to be tough to be on such a restricted diet. Look at non-food lists. Dum-Dum suckers, cotton candy can break up the monotomy and still feel like a treat. Granted my daughter was younger, but I enjoyed thses treats with her.

I forgot to tell about brand of vegan gluten free meals, Namaste. Not the world's greatest, but some safe easy meal starters.

OK to ease some of the discomfort try Slurpees, popscicles, or you may like warm teas. OK this is an odd theory but local honey. Honey is said to have some healing qualities, can soothe and "coat" the throat,is not supposed be allergenic, but has processed out the possible airborne allergens. This (hopefully) non-reactive exposure may lead to your body having more tolerance. (that's the theory)

You can find foods that are supposed to be "lower reactive" like avocado and such. When You find something you are reactive to; check the possible connected allergy charts.

[Sarahsmile416]

Well, it has been an interesting couple of days. I accidentally had food that had gluten (eggplant parm), but was lucky not to have a reaction ...that's what makes this so confusing because one day, any type of gluten under the sun, even a tiny amount will cause me a lot of discomfort, to say the least...the next, I will inexplicably be fine. Does this make sense?

I do think oils at this point are a huge culprit...it's just going to be a matter of figuring out which oils. I also am starting to think lactose may be an issue to a certain degree.

For the most part, I have been very careful though despite the fact that I am with my in-laws and basically have to check every food label to see the ingredients.

Thanks for the ideas on soothing the abdominal discomfort. I love honey and tea, which makes if easy, but am also a diabetic which makes things a little more complicated.

I will be calling the doctor tomorrow...not expecting any real answers, but hopefully I can speak my peace which will make me feel a bit better, I think!

Out of curiosity, does your daughter still have her gall bladder?

[Sarahsmile416]

Well, I talked to the nurse again of my GI and felt as if I was running around in circles with her. I said some people are gluten sensitive while not testing positive for celiac..,to which she says, you aren't celiac. I told her that I knew that...but why then do I have the C, D, low grade fevers and headaches when I eat a lot of gluten? She tried to tell me that the reflux and C+D could be related to which I am very skeptical since my step father (a doctor) said the two had nothing to do with one another. I told her I was planning on doing an elimination diet and she asked me if I felt better since going on it, to which I told her I had no idea because I had been only been on it for 2.5 days!

They didn't even want to do a follow- up, just put me on the meds. I couldn't believe it..,I pressed her for an appointment.,,but I really think after this I am just going to self-diagnose and then go on with my life. I can't take this kind of ignorance and I refuse to pay for more procedures.

I don't understand why doctors can be so ignorant and uncaring these days. Blows my mind.

[mommida]

My daughter has her gall bladder, I don't.

Keep a food journal. Keep a safe snack (s) on hand at ALL times.

It is possible you aren't a Celiac, but gluten is (YOUR) trigger for EE. That still means a gluten free diet is the only way to stay healthy, (in your case). Every case for EE can have different individual triggers. (but it is logical to start with "the usual suspects" of allergens. The top 8 & gluten are known to be a complex protein chain the human body has difficulty breaking down. Peas are coming up high for EE cases too.

You really shouldn't fixate on how much gluten makes you how sick. I do know what you mean about being confused about different reactions. Had a meal with an accidental gluten condiment. Felt bloated and slightly unwell. Had cross-contaminated gluten meal and I was running to the bathroom.

[Sarahsmile416]

Hi! Hope you had a good holiday!

I saw in another thread about testing for eosinophils - is that automatically done during an endoscopy or is it something you have to request?

I have definitely learned things about myself even after only being on this diet for about a week and not all have made sense. For example, I've figured out that I cannot eat sour cream but for some reason, egg nog I had no reaction to. In addition, going out to Olive Garden last night, I ordered the fonduta as an appetizer thinking if I ordered it with broccoli it would be fine. Definitely wasn't. I am not sure whether it was a CC issue,

whether there was gluten in it, or whether it was simply a dairy issue. I am definitely keeping a diary though - I make notes of everything I eat and note if I had a reaction to it or not.

Question - how do you differentiate between lower reaction or a normal reaction? Why would it matter - it's all a reaction, isn't it?

I find the other tough thing is going to be oils...I'm really going to have to start doing research about what type of oils are in what food...definitely not an easy undertaking!

[mommida]

The pathologists would have to follow what the doctor orders for testing. If the doctor doesn't order the test it isn't done.

Keeping record of type of reaction is difficult with eosinophils ~ because once activated, it can remain active for 12 days.

[Sarahsmile416]

So, if you want a doctor to test for eosinophils, you have to request them to? Is it usually done during the endoscopy?

[mommida]

It should be ordered tests from the biopsy samples. Eosinophils can be deeply embedded in normal looking tissue. It becomes apparent when the sample has been exposed to dye.