Tex: Regarding Entocort & pregnancy

[kimpatt]

Thanks for that information. I think that my pregnancies and breastfeeding will be a big factor in my treatment for several years to come. I don't think I'd feel comfortable breastfeeding and taking any medication really...unless, I desperately needed it, and it were ranked at a class 'C' or higher. We plan to have more kids, and I like to breastfeed for an extended time, so I really don't know what I'll do if I can't control my symptoms through dietary modification.

I am interesed in looking into Entocort further, but given its warning & my strong desire to breastfeed, it will likely be quite awhile.

Honestly, I still don't know how much of my symptoms are related to the eosinophilic condition that may not be helped by Entocort, anyway. I've not had these symptoms since giving birth, but today they were back (heartburn, belching, nausea, trapped gas). *Shudder* These are worse for me than the MC diarrhea/constipation and don't seem to be helped by avoiding allergic foods. I hope I don't have to choose between meds and breastfeeding at some point....

Thanks again for your helpful information!

[tex]

Those symptoms, (heartburn, belching, nausea, trapped gas), are predominately upper-GI tract symptoms, anyway, (of course, trapped gas can occur just about anywhere in the plumbing), and Entocort only becomes activated when it reaches the lower third of the small intestine, and the colon, so you're probably right, in saying that Entocort might not be of much help for those symptoms.

Are you referring to eosinophilic esophagitis? Do you take anything for it?

Tex

[kimpatt]

Right, Tex, these upper GI symptoms *seem* to go along with eosinophilic gastroenteritis. I *think* I can tell a difference between MC & EG symptoms. I think MC is more responsive to soy & gluten removal from my diet, and symptoms are usually gas (lower), bloating, constipation, with occasional diarrhea. I can manage these symptoms ok.

The upper GI symptoms (all new to me since early 2007) are gnawing, boring stomach pain, sort of an 'inflated' feeling in my stomach (like I swallowed a big ballon), very little hunger (my 'norm' is a GOOD appetite; I exercise & run after kids a lot), early satiety, & horrendous heartburn, and a NEED to lie down all the time (both from pain and fatigue).

Part of my huge dilemma and my being slow to eliminate all of my dietary intolerances (of G, S, and D, D is the only one I had allowed up until recently, b/c I seemed able to tolerate it in small amounts, as I mentioned) and allergens, is my inability to discern WHICH condition is responsible for my symptoms. The reason it matters (I think), is that my MC really does seem to be affected by my intolerances (as you all have noted in your experiences). The EG, though, is very willy-nilly. I saw an expert A/I guy as well as GI at the eosinophilic clinic in Cinci, and they agree that so often this is caused by aeroallergens or that flares may come up with no understandable cause. The food allergies do NOT seem to be closely related to the flares. Avoiding the allergic foods may help some patients to lessen the likelihood of flares, but it is very likely that someone closely avoiding all of their allergens will still flare, and they don't know why. This has been my experience, too.

In my own experience, and this confuses me, I'll seem to get the MC under control. Last week I was feeling pretty good. After eliminating the goat's milk, the lower-GI gas and constipation stopped. So, now GF, SF, and fully DF (no ghee-sigh). But on Tuesday, I had bad diarrhea a few times with a bit of nausea and a foreboding feeling that a worsening of symptoms was coming. This was sort of an emotional 'down' that almost feels like it comes WITH the EG symptoms -- not caused by them. The diarrhea stopped, but the nausea, decreased hunger, early satiety has been off and on since then. I'm pretty sure that a blood test would show elevated eosinophils right now. This is how I feel when they're climbing; no MD here yet to order though.

I'm not taking anything for it...again, b/c of pregnancy & breastfeeding. The A/I MDs last thought toward meds was perhaps swallowed (not inhaled) Flovent (fluticasone)? Gastrocrom is also used sometimes. Though I was diagnosed with eosinophilic *esophagitis*, my symptoms are more in my stomach...

Interestingly, it seems I may have just resumed menstruation. After my first son, this was when my 'new' upper GI symptoms began and worsened quickly...

[tex]

Kimberley,

You've probably been over and over this, and surely those doctors who diagnosed you with EE should have tested you for this, (more than once, because it is very easy to get repeated false negative test results), but I have a sneaking suspicion that you might have an H. pylori infection. Bear in mind that most cases of H. pylori infection produce no signs or symptoms, but when symptoms do appear, they can include things such as:

* An ache or burning pain in your abdomen
* Heartburn & Acid Reflux
* Dyspepsia or indigestion
* Gastritis
* Frequent burping
* Early satiety when eating
* Bloating and a feeling of fullness
* Fatigue / Low Energy
* Constipation or Diarrhea
* Anxiety
* Depression
* Mild nausea (may be relieved by vomiting)
* Unexplained Headaches
* Weight Loss or Weight Gain
* Bad Breath
* Feeling very hungry 1 to 3 hours after eating
* PMS
* Sinus Problems
* Skin: Urticaria. Rosacea, Hives, etc.
* Sleep Problems
* Autoimmune Conditions
* Ulcers

Here is a fairly comprehensive discussion about H. pylori, in layman's terms, at the link below. I don't know much about the author, but I have a gut feeling that he knows what he's talking about, because, (among other things), he points out something that I firmly believe:

Please note that irritable bowel syndrome (IBS) does not exist. Digestive symptoms always have a cause and the causes are infection, food sensitivity and exposure to toxins. If you can find the cause, the ‘IBS’ symptoms melt away.

Note that the author apparently is not a doctor, he is a functional medicine practitioner, who specializes in chronic digestive illness, and who took a special interest in H. pylori, when he was diagnosed with the infection himself in 2007.

http://h-pylori-symptoms.com/h-pylori-symptoms/

See what you think.

Tex

[kimpatt]

Thanks, Tex. Yes, I've been tested for H. Pylori. I SO wanted it to be the cause of my problems and was actually quite sad each time the test was negative

I've had testing by way of blood sample & biopsy, I believe.

I did read through the site's information, though, and I wonder if somehow the testing could have missed this? Sounds like its at least possible... My symptoms do match very closely most of what is listed there. That, along with my confusing symptoms that don't quite seem to fit into MC or EE/EG categories very well, cause me to want to look more closely at other possible causes.

I looked into the testing via metametrix (linked from the H Pylori site), and it looks like I need a local MD to order the tests for me, so I'll look further into that & perhaps check into the other 2 labs mentioned.

Thanks for the suggestion!