update...worsening symptoms with Eosinophils...?

[kimpatt]

Hello all! As my symptoms have been increasing this week, I thought to update you and ask your opinions. As some of you know, my coexisting diagnosis (??) of Eosinophilic Esophagitis/Gastroenteritis has muddied the treatment waters for me.

So about 2 weeks ago, we (my son & I) went off of dairy completely. For a few days, I felt noticeably better. The persistent gas (my main complaint) seemed to taper down by at least 50%. I'd had a few loose-ish stools (easily disintegrated), but no D...if anything, C prevailed over the last 2 weeks. Then a few days (maybe a week?) after that, symptoms ramped back up to be worse than before. I've read in your posts that many of you have experienced this, as a new intolerance is uncovered when the prior one is eliminated. So, now we are eliminating all legumes, after reading Gloria's thoughts on soy-legumes. As it is, I was eating PB & black beans or lentils maybe 4 times per week total. I'm not confident that this will reveal much, but we'll see. Eggs will be next, I suppose, so I dread learning that eggs are off-limits. They are an ingredient in many of our allowed foods.

For the past 2 weeks, I've also felt intermittent upper GI symptoms (for me, this is usually indicative of eosinophilic gastroenteritis), such as nausea, belching, epigastric pain. Now in the last 2 days, the upper GI symptoms are worsening quickly. All day I've had a persistent sore throat, which is a hallmark of eosinophilic esophagitis (though I was diagnosed with EE, this is my only EE symptom), and I've also had gnawing stomach pain, low appetite & early satiety. Not to mention, depression coming on, extreme lethargy/fatigue & very low tolerance for my kids I'm not feeling like such a great mom today; that's part of the emotional strain of these conditions, I've learned. Its amazing the difference in the emotional pain I feel with the upper GI symptoms versus my lower GI colitis. The MC doesn't affect me near as dramatically or seriously as the upper GI stuff...???

Now that my upper GI symptoms are going strong again, my lower GI system is surprisingly quiet (minimal gas). It has seemed that often my BAD flares start in my lower GI with a bout of colitis-seeming symptoms and end up in upper GI eosinophilic issues.

What would you do in my situation? I am strongly considering meds because I just don't believe that eliminating more foods is going to sufficiently help this entire large complex of problems (MC, EE, EG). BTW, I am strictly avoiding all of my strong, moderate & low-level allergens now (corn, wheat, soy, lettuce, broccoli, peas, squash, celery, orange, hazelnut, mustard are the strong ones & oats, peanut butter, watermelon are lower), whereas I'd 'tested' a few of them in the past. Aeroallergens are also implicated in EE/EG, so I don't know if they are affecting me or not.

Entocort won't likely help my upper GI symptoms, unless somehow its all related, right? Two EE/EG meds I'd consider are Gastrocrom which acts in the stomach, and Flovent which is swallowed (not puffed) which acts on the esophagus. Gastrocrom is a class B drug for pregnancy & not rated for breastfeeding, but I feel comfortable with that. The others are class C, and I feel reasonably comfortable with that & would investigate the details further as it pertains to breastfeeding. I did resume taking Singulair & Claritin today just in case the aeroallergens are a contributing factor.

Just wondering what your thoughts are...feeling awful & not sure what to do next. I do have an appt. with an internist next week. I'll at least ask for a CBC to check that Eos number. Thanks for your support, folks.

Oh, btw, here are my frequently eaten foods:

breads by Smart Treat (just realized it has oat flour--I tested 1 of 4 for oats as an allergy); will eliminate this for awhile & see...
grapeseed oil
blueberries
tuna salad made with lemon juice, mayo, cilantro
plain potato chips (made w canola)
salsa (no allergens)
chicken, beef
quinoa
rice
potatoes--either made at home or fried in canola
Tempt Hempmilk
Homemade cookies using Gluten-Free 123 mix
Tempt Frozen Dessert
Enjoy Life choc chips
So Delicious Coconut yogurt
kale
garlic
spinach
carrots
purple cabbage
apples

[tex]

Kimberley,

Are you sure you aren't coming down with the H1N1 virus? It's an upper respiratory issue, and your symptoms fit, especially if you have a cough.

Assuming that's not the case, a major part of your problem appears to me to be centered in and around your stomach. Remember that H2 receptors tend to activate the parietal cells of the stomach lining, which produce gastric acid. It would appear to me, (and remember that I'm not a doctor), that you need an H2 blocker. Claritin is an H1 blocker, and singulair is a leukotriene inhibitor. It's certainly possible that they might provide some benefit, but I think you should try an H2 blocker, because of the gastritis, and related issues.

I think that the oats should definitely go. Regarding food intolerances, remember that you have definitely tested positive to casein and soy intolerance, (in addition to gluten, of course):

Fecal anti-casein (cow's milk) IgA antibody 11 Units (Normal Range <10 Units)
Fecal Anti-Soy IgA 17 Units (Normal Range <10 Units)

FWIW, dairy products cause C for me, also, but that's a legitimate MC reaction, (even though many doctors don't seem to realize that MC reactions don't always have to involve D).

I note also, that since you have double DQ1 genes, many food intolerances are to be expected.

EE and Gastroenteritis are inflammatory reactions, and therefore, a corticosteroid should help. However, Entocort EC will not be very effective, because it does not activate until it reaches the ilium, and colon, and as a result, only the 10 to 20 percent that enters the blood stream, would be of any benefit, and that might not be enough to be effective, for treating your upper GI tract symptoms. If you're interested in considering Prednisone, here's the poop on breastfeeding considerations:

http://www.drugs.com/pregnancy/prednisone.html

I don't see anything major wrong with your diet, but remember that with double DQ1 genes, probably a few of those items may cause problems, in your case. The items that might be troublesome, include cilantro, salsa, beef, coconut yogurt, garlic, spinach, carrots, and apple. Just because they might cause problems, though, doesn't mean that they do cause problems for you - it's just something to keep in mind. I'm sure that others here will have different opinions on which foods might be problematic, since we're all different.

At any rate, I'd try an H2 blocker, (such as cimetidine, or ranitidine), before I considered trying Prednisone.

I wish I could be more helpful, but with double DQ1 genes, it's not likely that there's a simple solution.

Tex

[kimpatt]

Right, I should have mentioned that I have no other cold or flu-like symptoms. This sore throat has a completely different feel than the one I get when a cold/flu is coming on...

I've tried H2s in the past, and they helped only a very small amount. Zantac, I believe. I may try it again after seeing how the Singulair & Claritin work. I tried Singulair/Claritin since the eos are the main issue, and we feel they could be influenced by aeroallergens.

Right, I'm aware of my gluten, casein & soy intolerances. If I didn't mention it above, we're avoiding those completely. Of these 3 intolerances, I've avoided all of them, with the exception of casein, as it seemed tolerable here and there. But, as of 3 weeks ago, no casein at all. I was hoping that taking it away would help; it didn't.

I read that one EG patient used Entocort but opened up the capsule so that it would get absorbed earlier in the GI tract. At that point, though, I think its practically like taking prednisone? Prednisone is the last thing I'll try & will go with all other options first... My thought in considering Entocort is my belief that somehow the MC seems to 'start' this cascade of symptoms in me. MC symptoms always come first for a few weeks; then EG symptoms.

Incidentally, in searching through old medical records, I found a blood test for both Antigliadin IgA and Transglutaminase IgA, and in both, I tested negative at <20. The reference interval was as follows: <20>30 = moderate to high positive. Any thoughts on this, Tex?

Will keep on the legume elimination and will try eggs next, assuming I can tolerate these symptoms without meds for a few more weeks.

Thanks for considering my tough case. Yes, I know I won't find a simple solution. I'm long past hoping for one of those! Dang it!!

[tex]

Kimberley,

There's a chance that budesonide, (without the enteric-coated capsule), may not be near as risky as prednisolone. Consider this study which compared the relative risks of inhaled budesonide and oral prednisolone:

Study objective: Because nebulized budesonide may be used as an alternative to maintenance
oral prednisolone in the treatment of severe chronic asthma, it is important to compare these two
drugs to determine their relative systemic bioactivity profiles in terms of effects on adrenal, bone,
and hematologic markers.
Design: Twelve asthmatic patients (mean age; 34.7 years; mean FEVX; 88.3% predicted; mean
forced expiratory flow between 25% and 75% of FVC, 54.8% predicted) were studied in a
double-blind, double-dummy, randomized crossover design to compare placebo, low, medium,
and high doses of nebulized budesonide given bid (1, 2, and 4 mg/d, respectively), and oral
prednisolone given qd (5, 10, and 20 mg/d). All treatments and both placebos were given for 4
days at each dose level with a 7-day washout period between each treatment block with
budesonide or prednisolone. All measurements were made at 8 am after the last dose of each dose
increment for plasma cortisol, serum osteocalcin, and blood eosinophil count.
Results: Regression analysis showed significant dose-related suppression with prednisolone for 8
am plasma cortisol (p<0.0001), osteocalcin (p<0.05), and blood eosinophil count (p<0.0005), but
not with budesonide. Compared with placebo, there were significant differences only with
prednisolone, at the medium- and high-dose levels for all three markers.
Conclusions: For all three systemic bioactivity markers (8 AM plasma cortisol, serum osteocalcin,
and blood eosinophils), there was significant dose-related suppression with prednisolone but not
with budesonide. Further long-term studies are required in more severe asthmatics in order to
evaluate the therapeuticindex. (CHEST1998; 114:1022-1027)

Note that this is a comparison of oral prednisolone, and inhaled budesonide:

There are few dose-response studies in asthmatics
comparing the systemic bioactivity of inhaled corti¬
costeroids with other inhaled corticosteroids or with
placebo.6-8 There are also few dose-response data
comparing systemic bioactivity of oral and inhaled
medication. Two such studies have been performed
comparing inhaled budesonide with oral pred¬
nisolone, one in asthmatics9 and the other in healthy
volunteers.10 In both of these studies, budesonide
was given via a large volumatic spacer. Therefore, we
felt it was important to perform a direct comparison
of oral prednisolone and nebulized budesonide,
which are commonly used to treat chronic severe
asthmatics.
In the studies mentioned above, the milligram
equivalent potency ratio for cortisol suppression for
prednisolone vs budesonide was calculated to be
7.6:1 for steroid-dependent asthmatics9 and 5:1 for
healthy volunteers.10 We therefore chose a putative
dose ratio of 5:1 for comparing nebulized budes¬
onide and oral prednisolone.

http://chestjournal.chestpubs.org/conte ... 2.full.pdf

Considering your sequence of symptom development, I'm wondering if controlling the typical MC symptoms, (with Entocort, if necessary), might preempt the subsequent development of EG symptoms. I believe that's definitely worth a try, since MC typically causes a wide range of other issues severe enough to be diagnosable as separate diseases, (in some cases), and yet, those other symptoms/diseases resolve, once the MC is brought to remission.

Incidentally, in searching through old medical records, I found a blood test for both Antigliadin IgA and Transglutaminase IgA, and in both, I tested negative at <20. The reference interval was as follows: <20>30 = moderate to high positive. Any thoughts on this, Tex?

I believe that (0-19), is considered to be the normal range for the "classic" celiac blood tests for those antibodies, (Antigliadin IgA and Transglutaminase IgA). Some people seem to use (0-20), as the "normal" range. Note that these "normal" ranges can vary, depending on the brand of test kit used. Some European assays, for example, use 15 as the cut-off point, for the "normal" range. Anyway, the bottom line is, like most of us, your blood test results for celiac screening, were negative.

One of the main problems with treating MC, (especially with diet), is the fact that you never really know how close you may be to achieving remission. You might feel hopeless one day, and the next day find yourself in remission.

You'll find your solution - perseverance pays off.

Tex

[connie]

Hi Kim,
I read your post with a lump in my throat as I too have had the upper gastro distress along with the other MC issues. I started the gluten, dairy, soy diet three weeks ago and eliminated eggs just in case. I have always loved eggs so it was hard. Last night I had one boiled egg with dinner as I have worried about getting enough protein. I became nauseous right after eating and the upper burning and pain was horrible and seemed to last forever.
I too stuggle much harder with the mental effects and depression of the upper symptoms. Try hard not to burden yourself with guilt about how you are reponding to your family right now. Maybe you have a family member who can give you some help. I hope you will find the answer through the right medication. Thinking of you and wishing a quick recovery. Connie

[ant]

Dear Kimberley

So sorry to read about your increasing symptoms. It is so hard when things seem to go backwards. I am thinking about you and pray you turn the corner soon.

Best wishes, Ant

[kimpatt]

Thanks for the article, Tex. If I'm understanding it right, its saying that budesonide does not have the same 'negative effects' (bone, adrenal) that prednisolone, does, right? I'm a bit confused because it seems they categorize a lowering of blood eosinophil count as a 'negative', since they group it with serum cortisol & osteocalcin?? But, I WANT a lowering of blood eosinophils...? Budesonide was one treatment we talked about with my allergist/gastro at Cincinnati Children's Hospital.

My husband & I have had the same thought as you regarding Entocort. That perhaps it may stop the colitis cascading into Eosinophilc issues. Entocort is the drug I was 'most excited' about. I like that it is minimally absorbed & works locally, but its steroid activity is what I know I need to eradicate this overwhelming inflammation (eosinophils). The other drugs (Gastrocrom & Flovent) seem to mostly just treat symptoms?? I don't know this for sure. Gastrocrom is much harder to take, too. Four times per day at least 30 minutes before a meal. With our lives right now, that's a lot of planning & preparation. I can surely do it if need be, but I'd rather find another solution. Also, with Entocort, I like the *possibility* (however small) of achieving remission. After Gastrocrom, symptoms most assuredly recur from all I've read.

Wanted to let you know that I tried Zantac today, and it did seem to soothe my mid-esophagus down to my stomach. Yay! My colon, though, now that my upper GI is quiet, is gassy, bloated, rumbly. But, again, I prefer the lower GI symptoms.

Connie, I'm so glad you wrote. What are you eating now? What are your typical 'meals'? Unfortunately, my bread & desserts still contain egg, and I so don't want to eliminate them. I know you understand. I think they'll be next, though. Do you use egg replacer? How is it? Have you found a good egg-free bread, by chance?

Ant, Thanks for the encouragement. I've been following your journey in your posts. Here's to hoping you find your solution soon, too!

Will update you all.

[adelie]

Hi Kimberley,

I completely understand what you're going through. It seems like with each test something new pops up. For me, it's been MC, eosinophils, dysphagia, Barrett's esophagus, hiatal hernia, gastritis, gastroparesis, villous atrophy, slow small bowel transit, poor GI muscle tone and a colon with two kinks, two twists and a loop (and I probably missed something). Yep - got it covered end to end. I think by the time my doctors combined the list of things to limit for each of the conditions I was down to water.

Anyway, the low appetite and early satiety is typical of gastroparesis. In my case, the gastroparesis is due to poor muscle tone and the frequency of contractions is pretty much OK. My gastritis also seems to be related to poor muscle tone in my stomach (biopsies have always been negative for H. pylori and other critters). I had just enough muscle tone for one side of my stomach to use food solids to beat up the other side of my stomach. The food solids acted like sandpaper creating the irritation. Zantac helps, but I also have to pay attention to the texture of my food. Liquids and smooth purees do well, but I can't deal with meats or doughy yeast breads (soda/baking powder bread was OK). The meats just don't break down small enough fast enough to avoid irritation and the doughy yeast breads tend to form a nice little dough ball that's tough to pass through. Getting protein is a huge issue for me and I just can't get enough from diet alone, so I supplement with a free form amino acid powder from Jomar Laboratories. It's not the tastiest, but before I started taking it I couldn't keep any sort of muscle mass. I also took Reglan for a while which really helped and let me eat a bit more solids, but it's not something that can be used long-term and I had to stop it because of the developments of tremors. It's been a while since I stopped the Reglan, so I'm going to give domperidone a try. It doesn't cross the blood brain barrier like Reglan.

You asked about egg-free bread. I've found the book, "Wow! This is Allergy Free and Sugar Free" by Mary Yoder to be very helpful in learning how to modify recipes. She uses 1/2-1 tsp guar gum and 2 Tbsp water to replace an egg in many of her recipes. With some grains, she also uses baking powder and/or cream of tartar. For breads, it's usually to replace the yeast. Like most cookbooks, there are probably very few recipes you can tolerate as written, but she tries to switch up the ingredient options (i.e. different grains in the bread section) so you get an idea of the proportion of guar gum that works best with amount of each grain. Oh, mentioning guar gum reminds me... I've seen several posts of people being sensitive to carrageenan, Tempt milk used to use xanthan gum but now the manufacturer uses carrageenan.

With Entocort, I do break the capsules and just take the pellets inside. If I don't, the capsules often pass intact, which doesn't do any good. When I started doing that, I did get a little more relief with upper GI symptoms. Enteric coatings are generally pH dependent, so you might have to play a bit with the timing of the Zantac and Entocort to find what works for you.

Hang in there!
Karen

[tex]

Kimberley,

I noticed that too, but apparently that effect is due to the difference in the mechanisms involved in oral versus inhaled corticosteroids, as mentioned in this research article:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2606647/

This study has just been completed, (in September), but apparently the results have not yet been posted:

http://clinicaltrials.gov/ct2/show/NCT00638456

The treatment you are interested in is apparently doable, and safe, based on the information in this article, (this is probably the treatment that your doctor at Cincinnati Children's Hospital was referring to):

http://www.ingentaconnect.com/content/b ... .alexandra

Taking budesonide in this form, however, might not fully resolve your lower GI tract MC symptoms, so I can't help but wonder what the risks might be for taking both forms, concurrently. I believe the chances of you achieving remission with Entocort are quite good, (rather than the "however small" possibility that you mentioned).

I agree that gastrocrom would probably not be a "cure".

Hmmmmmm. That's an interesting reaction to the Zantac. It's almost as if your MC insists on acting up somewhere.

Incidentally, you can find recipe substitutions for eggs, and virtually anything else, in Dee's Kitchen, along with hundreds of recipes that are GF, DF, and SF:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7


Tex

[kimpatt]

Hi Karen! Thanks for sharing your experience. I'm so sorry you've had such complicated problems!! Youre description of gastroparesis sounds familiar...it also feels like the word I'd use to describe how my lower GI feels (I have C for the most part, though I do have D at times). I'll take a look at the cookbook you mentioned. I have a few and am modifying here and there. I decided not to eliminate eggs just yet (though I did toy with the flaxmeal/water replacer in one recipe). I figure I'm already avoiding legumes right now as a test, so I should do just one thing at a time. Eggs will be next. I wonder why Tempt switched to carrageenan? Cheaper? Will look into that as an intolerance at some point; not now.

I really am beginning to wonder how much of my problem is due to aeroallergens. EE/EG carries this possibility...actually Dr. Rothenberg believed they were just as likely as food allergies to cause major GI problems with eosinophils. I feel this could be the case with me because I have itcy eyes, a bit of yellow phlegm in my throat, but I'm not sick in the usual cold or flu way. It feels like allergies... I've noticed that whenever the upper GI system gets going, lo and behold, I'm having typical seasonal allergy symptoms as well.

I took 2 Zantac yesterday for upper GI pain, nausea, gnawing. I needed them both & managed to space them the recommended 12 hours apart. This morning I felt surprisingly good (no eos irritation in throat; no upper GI symptoms). They returned around noon, so I got to delay my planned 6 am Zantac until noon. Now, its been almost 12 hours again, and I still feel ok. This time, after the Zantac abated my upper GI symptoms, I noticed lower GI bloating, gas, feeling a need to have BM (but not)...so its all still going on down there.

I see an internist next week. We know him, and I think he may do what I ask. i think I'll ask for Entocort. Before doing so, I'll read up on it a little more here so I know exactly what to expect... I think Entocort is a good place to start, and if I need to add the budesonide for upper GI or Gastrocrom, I can do that later...

Thanks all of you!

BTW, the lemons of my flare brought about lemonade: apple-cinnamon muffins (rice flour, tapioca, potato starch, etc.), mushroom-chicken pizza (GF DF SF CF LF crust) with cashew cheese (luckily I've not reacted to it; I love this stuff for when dairy's not working out); Pamela's Bread in the breadmaker (GF DF SF CF) & a new trial of Sorghum-Amaranth bread today...

Glad I had the energy to bake...thanks to Zantac relieving my pain.

[connie]

Hi Kimberly,
I'm glad you had some relief from your symptoms. You asked about my diet. I'm afraid it's been pretty limited. Linberg rice cakes and rice chips, salmon, chicken, gluten free pasta and rice. I am trying the sunflower butter as I couldn't find any margarine without soy. Green beans, squash and just once asparagus. For bread I buy Food for Life Rice and Almond Bread. It is in the freezer section and I keep it in the freezer. I always toast it and put huckleberry jam on it. (I live in huckleberry country) For a cookie I eat Nana's lemon cookies, they are gluten, dairy, egg free with no added sugar. For breakfast I eat Mesa Sunrise cereal with rice milk. I make chai tea with organic chai decaf tea and rice milk. I am not an inventive cook and have to rely on others for recipes.
I have eaten some deer steak and roast. I am not going to be very adverturous for a while as I am still struggling with symtoms.
A big concern is cost. I wouldn't be able to feed a family with what I am eating.
Four days ago I dropped to one 3 mg dose of Entocort from 6 mg and I may have to go back to 6 mg with how I am feeling. I am also taking 8 pepto bismo a day. (my internist wanted me to try the Pepto Bismo) My internist also prescribed Dicyclomine but I just got the prescription today so I can't say how it will work. I have digestive spasms and it's supposed to help with that.
I know when my lower GI is happy it seems that I don't have the upper stuff going on. I think Tex is right about the getting the MC under control. Entocort seems to have the track record. We are all different but I think it's worked the best for me.
Wishing you lots of good days. Connie
Connie

[ant]

Hi Connie

How long have you been on both Entocort and Pepto Bismol? I am thinking of testing that combination.

BTY I asked Linderg if their rice cakes were made with brown or white rice. They are all made with brown rice. I am beginning to wonder if I have a problem (intolerance) with rice and if so I think white rice is better then brown rice.

All best, Ant

[tex]

Ant,

In case you aren't aware, the difference between brown rice and white rice, is fiber, (in the hull). The hull is removed, and the kernal is polished, to make white rice, (from brown rice). Most of the nutrients are also removed along with the hull, so that's why most white rice is "enriched", by adding nutrients back into it, after the hull is removed.

Tex

[connie]

Hi Ant,
I started taking the full 8 tablets of Pepto with my Entrocort on Oct 11 after reading Tex's post from that date of a study that showed promise of remission on the Pepto. Unfortunately last Thursday I had the brain storm to cut my Entrocort to 3 mg and today had a full blown attack so it's back to 6 mg and maybe 9 if I don't start feeling better. I have been on my second short round of Entocort for 1 1/2 months and my gastro doc wanted me off it completely. Thankfully my internist said she would refill it.
After reading your post I was worried about the brown rice until I saw Tex's post about it being the outer part of white rice. I feel like I'm doing something wrong as I am still losing weight and not feeling very well. I won't mess with the Entrocort for a while. Going to work is a huge challenge with my whole digestive system in an uproar. I think I'm not making much sense but boy I sure am sick. If you try the Pepto I would definitely stay on the Entocort as I'm not sure the Pepto is the complete answer if you have a lot of swelling and a tender gut. Hope you feel better soon. Connie

[kimpatt]

I've not tried many meds, but Pepto is one that always seemed to work for my lower & upper GI issues. I didn't realize it was an MC treatment when I was taking it; this was before I was even diagnosed. Wouldn't mind taking it again, except, I think the subsalicylate is contraindicated for breastfeeding...?? If it worked and were allowed, I'd rather be on this than Entocort...hmmm.