How to find a Dietician?

[DebE13]

I'm exploring the realm of Dieticians and have come up with nothing. I've been GF/DF for about 2 1/2 months and SF & no eggs for about a month and thought I'd be feeling better than I am. I've been off prednisone for about a month which caused many awful side effects and made figuring out problematic foods impossible. I went two weeks with severe D after stopping the prednisone hoping everything I had eliminated from my diet would show some progress. It didn't, so I started budesonide which helped. I've been taking 9 mg/day for 2 weeks now and was told by my GI to continue for another 3 weeeks. It's not as effective as the prednisone and I described it as "barely working." Instead of the 6-8 purely water D's a day, it's down to 3-4 loose D's without the night time issues. It is working but I feel like I'm on the verge of slipping into the watery catagory again which is disappointing because I want to reduce the dosage. The urgency is still there but I've been much worse.

I was a bit surprised when the printout said a card should be carried or medical alert be worn when taking this drug and was completey floored when I read the RX cost was $1500. I even called the pharmacy to confirm- I was convinced it was a printing error. I am fortunate to have excellent insurance and only pay a $5 co pay but I couldn't believe that it cost this much and this is the generic. Unbelievable.

Anyway, I'm looking into having the MRT test done and have called the two major health care providers in my area looking for a dietician familiar with the LEAP program and MRT testing. One provider stopped the program because they couldn't justify the cost when there were so few users and I was told to look on the internet. The other provider said their dieticians heard of this but really weren't too familiar with it. I did the pre-screening with Signet Diagnostics and have been playing phone tag with them since Thursday. I was trying to get this covered under my health insurance as I did with the Enterolab test but I feel like I'm at a dead end. Should I try to coordinate with a local dietician to facilitate or do I just pay out of pocket and work directly with Signet? I'm hesistant to pick a dietician out of thin air who I know isn't familiar with the LEAP program and will be clueless to MC. I don't think I can handle another medical "professional" that has less experience than me. Not to sound like a know-it-all because I am currently floundering but you know what I mean.

I stopped my food diary a week ago (big mistake) because I was frustrated and tired of tallying how many and what kind of poops I have and recording everything I ate. I can't tell what bothers me and what doesn't. I ate a bit of chocolate yesterday in an all time low and the only thing I notice were some rumblings. It was the first slip I had since December. For the past two weeks I had/have a nagging headache and the eye burning/pain & sinus issues have returned with a vengance. Now I wonder if it's aggravated by the budesonide. I thought the headache was either flu related (husband was sick) or because I had my period but I'm not sure. The whole sinus/eye thing took me by surprise because it was slowly improving so I thought the diet was helping. Now it's worse than ever and has now developed into feeling like there's fuzz in my ears. It sounds trivial but I seriously contemplated going to the walk-in to get some relief. I feel like my head twice it's size and now I can't hear so well because of the fuzziness. I knew the doctors would dismiss it and it'd be a waste of money. I don't have a sinus infection, I'm not sick, and it's all related to food. I've tried tylenol for the headache- didn't touch it and I've been taking the Target brand equivalent to Claritin and it hasn't helped either. My sinuses feel inflammed yet my nose is always running. My eyes burn again and feel like they're going to explode. My chest and neck are mildly itchy. It feel so much like an allergic reaction but it's not. It's maddening.

I tried a strict diet of turkey, rice, potatoes with my daily cup of coffee for a week and didn't notice anything different. I was more attentive to the dates, dried apricots, high histamine foods after I posted my menu and got suggestions from everyone. I am afraid to eat anything right now. This is going to drive me insane. Suggestions would be appreciated.

[tex]

Hi DebE,

I've forgotten, if you posted it - did Mary Beth strike out on locating a dietitian? If so, frankly, I doubt that one not certified to work with the program would be much help, especially for someone who not only has MC, but MACD, also.

The headache, sinus problems, burning eyes, itching, and all the other allergy symptoms are clearly mast cell activation disorder problems. You are on the right track by avoiding foods that either contain histamines or trigger the release of histamines.

You may have a severe DAO deficiency, and there's no way to get rid of the residual histamines that have built up in your body. Histame might be very helpful for clearing out the residual supply. Taking it daily for a while might get you back on track.

Tex

[DebE13]

No, Mary Beth wouldn't be aware that I was looking. I've been following some of the recent threads with the same topic but haven't posted anything before today. I was making calls on my own, locally, to see what is available and if I'd need a referral from my GI. I just checked in with his office on Friday for the budesonide and didn't even bring up the allergy like issues because it's too frustrating to be ignored & they already think I'm a nut. The only focus is the D.

I've been following threads about histamine & mast cells but wasn't sure how it relates to me. Is it something that should be tested? and how knowlegeable are GI's with it or is it another specialty that deals with it? I've never heard of a DAO deficiency but will now dig into that a bit more because the itchiness and sinus/eye issues are interfering with my day to day functioning at this point. It's intolerable at the moment. I looked up Histame on Amazon- what's the amount you'd recommend taking? Would it be with every meal with the elimination of high histamine foods? Maybe it'd be best to see if I get any relief from that first then do some investigating with testing? That will be much cheaper than a doctor visit or is that backwards? I'm ready to take blood myself it that would give me any answers. I can't tell if the itching is getting worse or if it's because I'm so focused on it. I feel like if I were to look in the mirror I would see mass puffiness and welts, however I look completely normal except for having glassy eyes. It all seems absolutely ridiculous.

It'd be much easier if I was a nut because then the men in white coats could come take me away and maybe then I'd get some rest and relaxation. Struggling to keep a sense of humor. Although, like you said Tex, it could always be worse. sigh. I had a good cry this morning until I realized that makes the sinus issues worse. I'm so thankful for the guidance and support offered here. Eventually something has to get better- I'm approaching my five year mark in a few weeks and am faced with either totally giving up out of anger and frustration or hoping that I'm just that much closer to finding a way manage this horrible beast. I've often been told that I'm stubborn so I guess I'll stick with plan B.

[tex]

DebE,

Plan B is the way to go, because you're getting close, IMO. You have all the symptoms of MCAD or ME, and unless you need a prescription, I'm not sure there is much point in trying to find a doctor who could help you, because there are so few who qualify, that we probably have about 90% of them on our short list:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421

Unless you can see one of the docs on that list, the one you see will probably become more glassy-eyed than you feel, when you bring up the subject of MCAD or ME. If you respond to any of the treatments recommended for ME or MCAD, then that is sufficient diagnostic evidence, that you have a mast cell disorder.

If you want an official diagnosis of ME, you can ask your GI doc to have your biopsy slides re-stained with a tryptase-based stain, (which the pathologist will probably have to special order), and have the slides re-evaluated for an elevated mast cell count, (mastocytic enterocolotis). I can tell you right now, though that fully 70% of everyone who has either Crohn's disease, UC, celiac disease, or MC, will qualify for a diagnosis of ME, so I have little doubt that you qualify for a diagnosis of ME, and if you don't qualify for a diagnosis of ME, then the odds are about 99 to1 that you have mast cell activation disorder, (which is a lot tougher to diagnose, but probably even more common).

Hang tough - I'm convinced that you've found the problem. Now to find a treatment that works. Frankly, I have no idea how much histame would be a proper dose, but hopefully Gloria, or Mary Beth, or Julie, or Faith will be able to help with that. I believe that most people take it once per day, but they take the H1 or H2 antihistamines prior to each meal. If you have a DAO deficiency, though, (and research suggests that many of us do), then minimizing your intake of foods that contain high levels of histamines is probably critical, also. And research shows that stress boosts histamine levels in mast cells, so minimizing stress is important. I wish I knew how to do that, but unfortunately, I don't.

That's why this condition tends to be self-perpetuating, once it is initiated.

Tex

[Gloria]

Hi DebE,

I'm not convinced that Entorcort is not working for you. It took 4 weeks for it to begin working for me. It seems like it should work a little faster for you because you had taken prednisone first, but don't give up until you've taken it a little longer.

There are a couple of good threads on treating MCAD:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13981

http://www.perskyfarms.com/phpBB2/viewt ... torder=asc (Julie describes her treatment regimen on page 3)

Gloria

[DebE13]

Gloria, thanks for the references- I'm learning a lot and have some direction now.

Tex, thanks for confirming my thoughts on the doctor route. I have to do another colonoscopy in three years due to polyps found this year- maybe I'll ask for it then.

I don't know how to improve the stress part since the past two years have been one thing after another. 2011 was a horrible year for me and my family with 6 major "events" that caused considerable stress. Not much can surprise me these days- after a roller coaster of a year I've simply come to expect the worst in many aspects of my life. Please don't interpret this as a plea for pity because it's not what I'm looking for. I believe that we have many lessons in life to learn and apparently I signed up for the accelerated course. I'm just pleasantly surprised when things work out.

I'll have to re-evalute my menu and give it another try along with some of the OTC suggestions. I've got my fingers and toes crossed. I'd cross my eyes too but I'm afraid what mom always said might be true and I can't take the chance.

[DebE13]

As I sit here itching from the inside out with my drippy nose and heavy sinuses I'm reading the 48 page book from the Histame website. I was feeling pretty good that many of the items listed such as alcohol, cheese, processed meats, etc. weren't a big deal because I can't have them anyway. Having a very limited diet right now confused me as to why I would have such problems now when I didn't have them before going GF, DF, SF, egg free, legume free.... some of the foods I used to add excitement to my meat, rice, and potato diet were dates, bananas, raisins, dried apricots, tuna, tomato, bacon, and nuts to name a few. The part that really got my attention was the left over meats and "old" nuts.

I generally do my cooking on the weekends so I have easy meals on hand during the week. This is now a bad idea even if frozen? sigh

Also, I eat a ton of nuts but now these should be avioded too? I wasn't sure how to interpret the "poorly handled or old nuts" part of the book. Aren't they all old? I'm in WI so there aren't any fresh one I can get. My uncle lives in TX and sends boxes of pecans (yum) to crack but would these be considered old too?

I'm struggling with finding good alternative protien sources to meat since the legumes were set aside. I like to tuna in olive oil but now that's out too.

My hair seems to be thinning considerably these days and I'm concerned about adequate nutrition. I've ordered the Histame to give it a try- it's a shame I can't find it locally and have to wait for it to be shipped. I'll be on my way to try the Nasal Crom and hopefully find some relief to sinus/eye issues today.

Another interesting thing I read in this booklet was an example of a female who had recurrent migraines during menstruation and how that is indicative of this condition. That was me in my 20's/30's and the reason why I used to take 6 ibuprofin at a time which didn't help much anyway yet I continued that practice for a long time. How stupid. I've experience far less problems with migraines after changing my diet a few years ago but they're starting to creep back.

I'm still looking into the MRT because I keep thinking what if I'm one of the few who have issues with rice or pork or anything I'm currently eating. Maybe I'd be best to give the Histame a try and go from there. I'll have to take a moment to reorganize my menu because it looks like most of it is off limits now.

[Gloria]

Deb,

There is some good news about the frozen meat. My understanding is that if the meat is frozen, it doesn't accumulate histamines at a rapid rate.

I don't know which booklet you're reading, but you'll find some differences between different lists of high-histamine foods. The list that I have shows that most nuts are OK, but pecans and walnuts are high in histamines. I've never read about the difference between fresh and older nuts. Perhaps that's why I'm not able to eat nut butter. Most of us can't eat whole nuts while we're still healing; they are too rough on the gut.

I was quite unhappy to give up tuna, too and understand how you feel.

Perhaps you'll find some relief in taking OTC meds.

Gloria

[DebE13]

My delivery is scheduled for Wednesday so I'm just tip toeing around most foods until then.

It's hard to tell which sites are accurate with their information. I also read that freezing doesn't matter so I don't know what to believe. I am fortunate to be able to come home for lunch but I still need to prepare meals in advance for during the week- it's too stressful otherwise or I end up eating not enough or things that I shouldn't.

I saw cashews and walnuts on one list, nothing about pecans. Bananas have been on both. Haven't seen honey but I'm curious. Peas have been on both although I'm trying to avoid legumes until I figure out if they're offending foods or not.

[tex]

I also read that freezing doesn't matter so I don't know what to believe.

This is in regard to my post about histamines in food:

Freezing won't matter if the mold is already present, but it will certainly stop mold formation from occurring if it does not already exist, and freezing will prevent it from progressing. IOW, it would be pointless to freeze dried meats, but fresh meats would certainly benefit from freezing, if they are not going to be used immediately.

Tex

[brandy]

This is a question for Tex re: nuts. I'm not presently eating nuts but hope to retry them maybe in 3-6 months or so. For those of us with MC are we better off buying say a new crop of Georgia pecans when they come on in November and storing them in the freezer and pull them out as we are going to use them? Thanks, Brandy

[brandy]

Hi Deb,

I saw your post this weekend and mostly just wanted to send you good wishes as it sounds like you've been through a lot with this disease. In regards to your comments about hair loss--the first two weeks that I was on Entocort I had alarming hair loss. Now that I'm off of Entocort for about 6 weeks I would say that my hair is better than before I had MC. Even my hair dresser commented on it. Really wish you a good recovery. Brandy

[tex]

For those of us with MC are we better off buying say a new crop of Georgia pecans when they come on in November and storing them in the freezer and pull them out as we are going to use them?

Probably, because as far as I'm aware, pecans aren't usually stored in climate-controlled warehouses, but I'm just guessing.

Tex

[DebE13]

Thanks Brandy,

My already thin & fine hair started thinning before I started the entorcort- I hope it doesn't get worse. It seems so vain but it makes such a difference I the way I feel when I look in the mirror. I normally highlight my hair and have stopped because I'm afraid it may stress things even more. Yesterday I woke to find incredible soreness in my upper leg muscles and felt like I climbed Mt. Everest along with a rash on my face after I got overheated at work. Don't know what that's about. I got my delivery last night and tried the Histame- I think it helped some but I can't tell. I'm also going to try the NasalCrom this morning to see if it does anything for the sinus/eye issues.

I received an email from Signet indicating the MRT is $495 on its own or $795 with a dietician. I'm frustrated that I can't get my GI to approve it so it's covered under my insurance. grrrr I'm also trying to figure where to get the blood drawn. I'll have to look into the possibility of using a local dietician to just get the referral but by the time I'm done with deductibles and copays it may be a wash as far as out of pocket expense if I could even find one willing to do it. I'm not even sure if I need a referral from my GI to go to a dietician.
Too many "what ifs" for a test I want done right now.

Do you have a specific noticable reaction when you eat nuts? I'm thinking I should stop for a while but I don't have any discomfort when I eat them and I have so few things to choose from I hate to put them aside. Thanks for your words of encouragement- it helps more than you know.

[brandy]

Hi Deb,

Hang in there with this disease. There were many times when I felt I was "getting worse" as time went on but now I'm doing amazingly well. Joint pain is common with this disease. Before I went on Ento I had about 30 days of severe joint pain...i.e. really extreme. I had to sit on the sr. citizen bench at the front of the grocery store while my boyfriend bought my chicken and rice (I'm only 50). After about 30 days on Ento the joint pain went away. Also regarding nuts------probably I should clarify where I'm at with recovery-----I've been off of Ento for about 6 weeks and have had what I would call normans for about a week. If I don't eat nuts I have a norman. If I eat nuts I get "lots of little worms" that freak me out like I'm going to go backwards to WD. I'm going to hold off on nuts and retry in about 3-6 months. Popcorn does the same thing. I know it is very frustrating eating a very narrow diet and feels unhealthy but that is what it took for me. You can add in foods sooner than you think as you heal.

Just another thought....and this is just a thought...... as obviously you have to listen to your body. Some of us have sensitivities to rice. I know I do. Lesley does and the new person Nelson that has been recently posting does. I was able to get to "soft serve" eating chicken and rice but it wasn't until 2 weeks after I got off of Ento that I could clearly tell that rice was a problem for me. If I were to have a flare up again....and hopefully I never do.....I'd be eating Tex's flare food of meat and potato (or sweet potato). Potato (or sweet potato) might be a safer food but that being said I was still able to get to softserve once a day eating chicken and rice.

Also since I've been on this website many many people seem to get considerably better in 1-3 weeks. For me it took longer....more like 6-8 weeks of eating flare food and a lot of meditation/yoga with "solid poo" visualizations. This sounds really new agey but that is what I did. I got to softserve, once a day, 3 days before colonoscopy and a month before diagnosis, before finding this website and before going on Ento kind of like a blind pig finding an acorn. So hang in there as I know it is rough with job etc. Brandy