Saying Hello!

[kimpatt]

Hi folks! Many of you may not remember me... I posted briefly this past spring and summer, and since then we've moved, traveled for job interviews, and I'm pregnant again.

I was thinking of you all the other day as my symptoms flared & thinking I needed to check back in and read some helpful information...

Will read and catch up a bit. Hope you are well & headed for joyous holidays!

[tex]

Hi Kimberley,

It's great to see you posting again. I was wondering just yesterday, how you were doing, and if you ever got settled in, so that you might join us again.

Congratulations on the pregnancy. Theoretically, at least, the hormonal changes that go with it should put your MC symptoms on hold, once the progesterone builds up to a certain level, and you should be able to stay pretty well symptom free until you stop lactating. Of course, that doesn't meant that you can't have symptoms from the pregnancy itself.

Your list of allergies is very interesting, especially the hazelnuts, squash, and melons. That confirms what I was thinking yesterday, when I responded to a post that Joanna made, based on the fact that you have a HLA-DQB1*0501 gene. I hope you can find time to read it, because I think that you will find the article at the link that Joanna posted, and my comments about it, very interesting:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8943

Have you ever experienced any "burning mouth" symptoms?

Welcome back!

Tex

[Gloria]

Hi Kimberly,
Congratulations on your pregnancy! I'm sorry to hear that you're flaring and hope that being pregnant will subdue the flare.

There's a lot to read here, so I'm sure you'll be busy.

Gloria

[kimpatt]

Thanks, Gloria! :)

Tex, that was a very interesting article. I plan to read it again today or tomorrow & think more critically about whether I've reacted to some of the foods mentioned, other than the ones you noted. I never have had burning mouth syndrome...I don't think. I do have kind of a cold sort of pain deep in my throat that is hard to describe.

I am hoping my symptoms abate during this pregnancy. So far, though, they haven't :( I'm rather bummed about this. During my last pregnancy, I felt badly, and didn't know why. I was still eating ALL of my allergens and intolerant foods. I only gained 16# with that baby, and though he was healthy, I know that a better appetite could have served us both well. This time around, I'm avoiding all of my problem foods (except for occasional dairy which seems to affect me only minimally & inconsistently), and I still feel just as bad :(

I feel like my allergies/sensitivities are so numerous and widespread that my only chance at feeling good is to cook all of my meals from scratch. With a toddler and one on the way, I just can't afford the 2-3 hours in the kitchen nearly every day that my diet would require. I'm too tired..plus, there are so many other things I want to do with my son & family!

Well, have a good trip to FL, Tex! Hope you are home safely soon. We are heading to Orlando in just a few minutes....my son & I are accompanying my husband to a conference.

Take care all!

[JLH]

Have a great trip. CONGRATS on your pregnancy.

[harvest_table]

Hi Kimberly,

First off, congratulations on your pregnancy! That's exciting news and I'm sure you are thrilled. Like others, hormonal changes during this time can help with typical MC symptoms like D. I've read a couple pub-med studies that confirmed that also. Let us know how it goes.

I'm very interested in hearing more about your suspected Eosinophilic Gastroenteritis since from what I have read this is fairly rare. If you have time and can you post about this- what ever info you have is appreciated.

Also, what type of MC were you DX with? LC or CC? I looked up your first few posts and asked you at that time but can't find a response. I may have missed it somewhere.

Thanks for checking in and take care of yourself and that baby!

Love,
Joanna

[kimpatt]

Hi Joanna. Thanks for the congrats! Unfortunately, I'm still feeling horrible! As for my MC symptoms, they flared quite badly 2 weeks ago and still haven't calmed down yet. As they taper off though, I've been dealing with waves of nausea, extreme heartburn, gnawing stomach pain, reflux, and today, vomiting. I *think* that these symptoms are more of an Eosinophilic Gastroenteritis presentation in me. MC usually just looks like frequent, urgent diarrhea & lower GI pain; whereas, these upper GI symptoms seem to have begun at the end of my last pregnancy (2 years ago), but have remained with me.

Honestly, I'd take the MC symptoms all day over the EG ones. I'd rather be in a constant MC flare than deal with my upper GI symptoms. Not that I enjoy running to the bathroom or discarding my underwear in the Target bathroom, but the nausea and constant upper GI gnawing/burning and inability to eat is so much worse than the D for me.

I truly don't remember if I have LC or CC. That may be why I didn't answer. My husband seemed to think I had properties of both. If there is a more 'common' type, I had that one. I seem to remember the GI MD saying that I had the more prevalent type.

I'd be happy to answer any other questions about Eosinophilic Gastro if I can. I was diagnosed with it by my GI MD after CBCs revealed really high Eosinophils. Then, an endoscopy in August 2006 showed really large numbers in my esophagus & stomach.The GI recommended a course of prednisone, and I was so miserable that I almost did it. But, I hate meds --especially steroids-- and I held out. After that I put myself on the specific carbohydrate diet (no grains at all; no sugar; just fruits, veggies, nuts, honey, & 24* yogurt) & felt better. Then, in December 2006, I flew to Cinci to an EG specialist. I was not feeling great (had just that week included more foods in my diet -- not SCD any more). There, I had another endoscopy & colonoscopy, and they saw no abnormal eosinophils. So, the specialist says he doesn't know if I have EG or not. He had reviewed my orginal scope slides (Aug. 2006) as part of my admission criteria, and upon seeing those, he said I definitely had EG, and that it was one of the highest numbers of eosinophils he'd ever seen. So, it was quite a surprise for him to say he didn't know now...and was totally surprised to not find a high number of eos with his scope. He does think I have some variation of an autoimmune condition (in addition to MC, I think), but I've been screened for quite a few, including lupus, with no positive results.

Sometimes it seems that an MC flare will precede an episode of the upper GI misery (what I think is EG). I'm not sure why this would be. I know pregnancy makes the heartburn/reflux worse, but what scares me is that I have it almost this badly when I'm not pregnant...

Let me know if I can help with any other info...

[kimpatt]

Hi everyone! I just looked through my prior posts and realized just how infrequently I'm checking in with you all! Alas, I last wrote when pregnant in December, and our son was born in May. Since then, we've moved to Roanoke, VA for my husband's job, and we are hoping this is our last move!! It should be!

As you may guess, I'm back to checking in with you because I'm not feeling so hot. Much like my first pregnancy, I felt WONDERFUL from the moment my son popped out until a few weeks ago. It seems I had a reprieve from my MC for about 3 months post-partum. I'm still lactating, FYI, and not menstruating yet. This same occurrence happened with my son, but I believe that the symptom-free period was a bit longer. THEN, though, I was eating ALL of my sensitive foods...

Right now I have NO diarrhea--but extreme bloating, gas, and some constipation, I believe. In addition, my fingertips are peeling (seeming very dry & sensitive); I'm having some private area burning/dryness; and I can tell that my facial skin is a bit more sensitive than usual. These things sound like a generic auto-immune response, perhaps. Also, my knee which has had several surgeries (last one July 2009) is more swollen now than it was 2 weeks ago.

I must say that I've been more liberal with my diet. I still eliminate gluten (which has seemed to be my main dietary problem) and most soy (I get it occasionally in baked goods that are GF from our co-op). Regarding dairy, hard cheeses have generally not seemed to cause much problem, but I wanted to try some farm-fresh raw milk from a new farmer friend. We drank it during the entire month of August with no problem, save a bit more mucous in my throat (which I expected) & perhaps a tiny bit more gas (certainly tolerable). Then 2 weeks ago, the gas/bloating began. I stopped drinking the cow's milk & substituted goats milk isntead. For a day or two I SEEMED to be doing better, but then my symptoms (gas, bloating, peeling fingers) continued on the same downward path they'd been on before the switch.

I am really feeling like my diet is not such a huge part of the MC equation..?? I can feel GREAT at times eating my intolerant foods (dairy; traces of soy) and my allergic foods (lettuce, broccoli, celery), and for a decent stretch of time too. Then, at times when I've eliminated everything intolerant/allergic, I still feel about 85% of my yucky symptoms. The slight improvement doesn't outweigh the great sacrifice. I really feel like diet helps me very marginally, but that overall my MC is going to do what it is going to do (flare when it wants) regardless. Thoughts?

I've not tried prednisone. Resisted that when my last GI suggested it. You may remember that we couldn't decide whether I had the Eosinophilic condition or not... In your opinions, would that be helpful? I only would consider trying it if it were likely that one short course could actually be helpful & not lead to the (seeming) inevitable path of long-term steroid use. Also, would Entocort likely help me, do you think? What about my other non-GI symptoms (fingers cracking, burning/dry private areas, knee swelling); I'm guessing Entocort wouldn't do anything to those.

Regarding my honeymoon period after pregnancy, have the rest of you experienced this? My first thought is to find a holisitc/naturopathic doctor who can help me look into other causes for my symptoms (other than possible food intolerances). I saw someone's post about low B6 levels, etc. I also wonder about a small dose of bio-identical hormones that could help mimic that post-partum benefit?

I am so enjoying our two boys right now but am forced to remember the horrible year that I spent in the bathroom when the eldest was a year old. I cannot do that--the ultra-flare situation--again and also be mom to 2 young kids. I'm also really enjoying being able to be less vigilant about every single food item. Like I said, I still avoid most things, but my symptoms seem to be less related to diet. Honestly, I don't know if I'm willing to cut everything out right now again. It is emotionally & physically difficult to contemplate losing the freedom I'd enjoyed recently...

Again, I'm venting with you guys! Would love your thoughts.

[tex]

Hi Kimberley,

It's good to see an update, and congratulations on the new addition to the family. You've raised some very interesting, and thought-provoking questions.

Right now I have NO diarrhea--but extreme bloating, gas, and some constipation, I believe. In addition, my fingertips are peeling (seeming very dry & sensitive); I'm having some private area burning/dryness; and I can tell that my facial skin is a bit more sensitive than usual. These things sound like a generic auto-immune response, perhaps. Also, my knee which has had several surgeries (last one July 2009) is more swollen now than it was 2 weeks ago.

The symptoms in your first sentence in that quote, sound like the C phase of MC, (and the swollen knee could be due to active MC). The other symptoms sound as thought you may be having an allergic reaction, possibly to the soap you are using, or to your laundry detergent, (maybe even your dish washing detergent) - or possibly to something in your diet.

If changing soap and/or detergent does not resolve those problems, I would suggest taking an H-1 receptor antagonist, (type 1 antihistamine), such as Benadryl, Loratadine, Claritin, Zyrtec, Allegra, etc. It might help with both your skin issues, and your digestive system problems.

I really feel like diet helps me very marginally, but that overall my MC is going to do what it is going to do (flare when it wants) regardless. Thoughts?

Like any of the other IBDs, MC can wax and wane, (though for most of us, it seems to do more waxing than waning ). It's even possible that it can go into spontaneous remission, without any treatment. For most of us, however, that never happens. It only happens to a lucky few, (very few).

Typically, when the diet does not control all the symptoms, there is at least one trigger food remaining in the diet, (probably an intolerance that has not been considered), and there may even be more than one. It can be very difficult to track down all the intolerances, in some cases.

To the best of our knowledge, there are basically three ways to control the symptoms of MC:

1. Medication
2. A carefully developed diet, that eliminates all food intolerances, (and all drug intolerances)
3. A combination of medication and diet

The alternative to those three possibilities, is to live with the symptoms.

Since Entocort can do virtually anything that Prednisone can do, (as far as treating IBDs is concerned), and it carries a far lower risk of side effects, if I were considering taking a corticosteroid, I would limit the choice to Entocort, but not everyone agrees with that viewpoint, obviously.

Based on the experience of members, (and internet case studies), pregnancy has two possible outcomes for someone with MC:

1. Remission of symptoms, (similar to the time frame that you experienced)
2. Worsening of symptoms, during a similar time frame, (IOW, during the period when estrogen and progesterone production is high), (with no period of remission)

Subsequent pregnancies will virtually always follow similar patterns, (IOW, the effect will be the same as that experienced during the first pregnancy).

My first thought is to find a holisitc/naturopathic doctor who can help me look into other causes for my symptoms (other than possible food intolerances).

I don't understand why you feel that something other than food intolerances may be causing your symptoms. The odds are extremely high that you have not eliminated all of your intolerances from your diet, and as long as even one intolerance remains, the diet will be ineffective, and your symptoms will continue. Here are the results of your Enterolab tests:


Fecal Antigliadin IgA 15 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 12 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)
Fecal anti-casein (cow's milk) IgA antibody 11 Units (Normal Range <10 Units)
Fecal Anti-Soy IgA 17 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0502
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

All of your food intolerance test results were positive, as was the anti-tissue transglutaminase test result, (meaning that you were experiencing an autoimmune reaction, when the sample was taken). You have double DQ1 genes. To get an idea of what that implies, look at the intolerances listed under Polly's and Gloria's avatars, because you probably have very similar intolerances. People with double DQ1 genes, who have MC, have the most numerous, and the most severe food intolerances.

I also wonder about a small dose of bio-identical hormones that could help mimic that post-partum benefit?

YMMV, but most of the members who have tried that treatment, have not been able to achieve remission, (though I believe there are exceptions).

Unfortunately, with this disease, avoiding most things, usually gives results that are not much better than avoiding nothing. MC is a very difficult disease to control. I realize that you prefer to not take a corticosteroid, (most people feel that way), but with double DQ1 genes, unless you are willing to go all out to discover all your food intolerances, and avoid them 100%, realistically, IMO, the only way that you are likely to remain symptom-free, so that you can enjoy raising your two sons, and not be constantly weighed down with recurring MC flares, will be to avoid your major food intolerances, and take Entocort, at whatever minimum dosage level is necessary to maintain remission. I realize that's not what you wanted to hear, and I apologize for not being able to perceive a more user-friendly plan, but based on what you've told us, (especially in your next-to-last paragraph), I don't see any other workable alternative.

Before trying Entocort, though, I would give one or more of the antihistamines that I mentioned above, a try, just in case your unresolved issues are due to mast cell involvement.

Tex

[mbeezie]

Hi Kimberly,

Sorry to hear you are struggling with your MC - this must be a very stressful time. Taking care of a baby is hard enough, but throw in a flare of MC and it's just not fair.

Like Polly and Gloria, I am also a DQ 1,1/5,6. I have numerous intolerances and have discovered the ugly truth about having to give up so many things to see progress. I had given up gluten, dairy and soy (completely, no cheating) and was so distraught when this wasn't enough. I have also had to elimnate many fruits, vegetables, GF products with tapioca, cane sugar, and even some meats.

I think your skin and GI problems are related. With MC we usually have what are called Type 4 hypersensitivity reactions, which are essentially contact sensitivities, not true allergies . . . when certain foods come in contact with our GI tract we release inflammatory mediators and get a response. For some, this sensitivity is also on the skin. I have experiened this and have to be very careful with soaps, shampoos, detergents etc.

I also have the yucky upper GI symptoms. I read in a previous post that you said you would rather have MC symtoms than the upper GI symptoms, and I agree. I have been diagnosed with oral allergy syndrome and have also had GERD, chest tightess/breathing difficulties etc. Sometimes my symptoms are very scary, not just annoying. I beleive I have mast cell involvement.

I have been able to eliminate my symptoms with diet, not drugs. Through careful elimination and observation I have been able to calm my immune system responses. I totally understand not wanting to give up foods and enjoying the freedom you had while pregnant. But I beleive Tex is right - unless you give up ALL intolerances, you won't make much progress towards healing. I think suppressing your immune system with H1 and H2 blockers like Tex suggested is worth a try.

Since you are still lactating, I am wondering how the baby is doing with your milk, especially since you are in a flare? Just curious. I had my child before I knew I had leaky gut and he was a very colicky baby and I am sure he responded to things in my diet.

Mary Beth

[JLH]

I don't know if you've seen Lucy's posts about SpectraCell testing or not. I have had my blood drawn for the micro nutrient test and am waiting my results.

www.spectracell.com