Malnutrition visit and now on elavil

[barbiem]

Hi all,
So went to a new GI specialist at the malnutrition clinic (now my 3rd GI) and she believes that it isn't the food causing my issues that it is my enteric nervous system in my entire gi tract. She believes that I have hyper hyper sensitive nerve endings which when I eat food that cause gas, then the colon expands which effects my nerve endings causing spasms and the urgency to go. This is why she said I couldn't tolerate at all a sigmoidscopy. So she put me on Elavil starting at 10mg and I have stopped all yogurt - it has been 2 weeks and for a while there it was getting better. I tested it out and added goat's yogurt in 1 day and I was immediately ill with diarrhea explosive!! So you were right, casein is an issue.

Now, I have lost 5 lbs due to no yogurt and cannot tolerate any fat as makes me very nauseas even if I eat chicken thighs that have more fat than breasts. I am down to 108 and am very worried.

I am currently taking ketotifen (at night and in morning) still taking my pancreas MT4 with every meal and then at night I am taking LDN, Ketotifen and now Elavil 10 mg (bumped it to 15 mg last night).

So I have been living off beef, bison, chicken and green and yellow beans for last 2 weeks without any issues. Now all of a sudden I am reacting to it. I would always get an immediate reaction to yogurt with a little bump in my gum. Never did with beef or chicken or carrots or green beans. Since dropping the yogurt my stools have gone from yellow to brown but there is always tiny bits and pieces never full formed?? why is this?

Yesterday:
Breaky: chicken thighs and carrots
lunch: roast chicken and carrots
Dinner: beef and carrots (Now BUMP ON GUM!!

Today:
Meds entocort 9mg and thyroid and ketotifen and water - immediate explosive diarrhea
Breaky: Chicken breasts and green beans (BUMP ON GUM!!) why now would I react to this?? I am sooo frustrated and in tears as I can't take this anymore - I don't understand what is going on with my body!! I am in tears again as I write this as no one seems to be able to help me here - drs think its in my head

could I possibly become intolerant to something I continuously eat??

I understand Tex's theory about how the body will attack the most important invader first and when that is gone it goes after the next. But I have been eating these foods for over a month with no reaction whatsoever. could it be the meds???

I wish I could afford the testing you have in the US - we have nothing here in Canada that is covered under medicare. most naturopaths have to send to the US for any testing as we suck here for stuff like that UGH!

So my question - when do I start to worry about my weight? should I try prednisone now to see if this will settle things down? Should I still keep going like I am? What should I do next ? Should I try cauliflower? I cannot eat any fruits due to candida and having oral allergy syndrome to birch makes it difficult to eat any nuts of any sort and I have to be carful with veggies. Potatoes also cross react with birch. I thought the ketotifen would have helped this somewhat so I could eat a bit more foods. Should I be searching for a immunotherapist dr iinstead of a GI? so confused!!

Thanks
babs

[UkuleleLady]

Are you taking budesonide? It seems warranted in your case. It helped me a lot in terms of weight gain.

I am allergic to chicken, according to enterolab. It could be you are reacting to chicken. Maybe you could try turkey for a while and see if that makes a change. I ate a lot of chicken while reacting, until I found this out. Also rice was surprisingly a problem. Sometimes the most seemingly benign things are those we react to.

Lamb is less allergenic than other foods, perhaps you can add it to your rotation. It's fatty and helps with weight gain.

Also carrots can be stimulating to the bowel. I know, this sucks. I wish I had more ideas.

I hope you feel better soon!

[tex]

Since dropping the yogurt my stools have gone from yellow to brown but there is always tiny bits and pieces never full formed?? why is this?

That's because your digestion is incomplete until your intestines do some serious healing, and healing takes time.

Meds entocort 9mg and thyroid and ketotifen and water - immediate explosive diarrhea

I wonder if you could be reacting to ketotifen.

could I possibly become intolerant to something I continuously eat??

Sure you could, and you probably are. I agree with Nancy — try turkey instead of chicken.

The problem with immunotherapists is that they don't understand that mast cell issues affect the gut, so they are no help to us. The only ones that know anything about that are the ones who are located at Brigham and Women's Hospital in Boston, and those who were trained there.

Tex

[Gloria]

The bump on your gum sounds like a histamine reaction. Meat must be fresh or, if frozen, thawed and cooked shortly after thawing because histamines accumulate quickly on it. After cooking roasts, I slice and freeze them immediately. Most of my meals are reheated frozen leftovers.

FWIW, green beans were the first vegetable I had to eliminate; carrots were also one of the early vegetables I gave up. My only safe vegetable at this point is cauliflower. I eat muffins and corn noodles for calories. Presently, I weigh 102 lbs. I am 5'2" , so it's not too bad, though I wish I weighed a few more pounds. You may want to test some safer grain flours or products, like rice or corn noodles, to see if you tolerate them. They will add needed carbs and calories to your diet.

Most of us have had to pay for the Enterolab or MRT testing ourselves because insurance usually doesn't cover them. If you can afford it, the Enterolab tests are very helpful.

Gloria

[barbiem]

thanks! I thought about the ketotifen but it has been a while now and I was fine before with it. Only new drug introduced is Elavil and I am more depressed on it but will give it some more time I guess. Tried pork tonight and my stomach made some serious noises with it - I felt like an ibs attack was coming but it settled down somewhat after passing gas.

The chicken I had was fresh off a roasted chicken but I remembered I am sensitive to gelatin and that is in the bones. Because I have never had issues with chicken breasts with no bone in. Weird. And yes I am on entocort (budesonide) and have been for 6 months now and I am not having tons of diarrhea but it seems the more drugs I add in the worse I get. I love that the ketotifen has stopped my racing heart and tingly sensation after I eat! but maybe I should stop it to see??? I am 5'6 and 108 lbs now and freaking out!!

I have never had an issue with green beans - they have been my staple for weeks and weeks now plus the chicken and beef. That is why I am confused. I guess I will have to bite the bullet and order the test but I am also thinking of ordering the other MRT or the Metametrix GI profile which tests for DNA of specific bugs in your stool. Anyone done that one??

I understand the histamine issue on day old foods but isn't that what ketotifen is for??

Glorie what type of muffins do you make? and I have never heard of corn noodles - maybe I should try those but then aren't we feeding the bad bacteria in our guts with those types of carbs?

Babs

[Gloria]

I make three types of muffins: almond, corn and brown sugar. I use a combination of almond flour, corn flour, cornstarch and arrowroot flour in them. The arrowroot flour serves as a binder, since I can't eat eggs. I buy Bob's Red Mill arrowroot in a 20 oz. bag for about $7. One bag lasts about a month.

I usually eat two muffins a day; one at dinner, sometimes one at lunch with soup, or as an afternoon or evening snack. They add 200-250 calories each.

My recipes are in Dee's Kitchen. I believe I was using quinoa in the recipes at the time I posted them. I eventually had to eliminate all flours but almond and corn flours, so that is what I use.

I take an antihistamine every day, but I still get mouth sores occasionally. It's still necessary to watch our histamine intake because it's easy to overload on them, especially when we're still healing. I wouldn't assume that Ketotifen is handling all of your histamine issues.

Gloria

[tex]

Barb,

Amitriptyline (Elavil) causes MC for many people, so it could be causing your reactions.

I understand the histamine issue on day old foods but isn't that what ketotifen is for??

Gloria is quite correct. If you are expecting medications to resolve your symptoms, you will be disappointed, because they are easily overwhelmed. Medications can certainly help, but they are not a complete solution. Diet changes are always the first line of defense when it comes to controlling food sensitivities.

Tex

[barbiem]

thanks - I thought a lot of people on here were taking Elavil? and research indicates that a tricyclic is better then an SSRI but Elavil is the only new thing added so will keep an eye on it. I will give it another week to see if anything transpires and I think I will try and borrow some money to do the enterolab tests

babs

[barbiem]

can I ask which is the best test to take - there are sooo many of them to choose from.

thxs
babs

[tex]

thanks - I thought a lot of people on here were taking Elavil?

Actually, only a few (that I'm aware of — I can think of 3 or 4 offhand) take Elavil. The members who take Elavil are basically in 1 of 2 categories:

1. They have been taking full therapeutic doses (such as 75 mg or more) for years to treat depression, and their body has become dependent on it, and so they cannot wean off it without experiencing unacceptable withdrawal effects.

2. They have constipation-predominant MC and/or motility problems and small doses (10–15 mg) help to regulate their motility.

We have at least as many members who blame the original development of their MC on amitriptyline.

can I ask which is the best test to take - there are sooo many of them to choose from

You get the most "bang for your buck" with Panel A. It tests for the most common food sensitivities (gluten, dairy, soy, and egg, at a discounted price of $269 (in U. S. dollars). If you can justify spending twice that amount, the combination of Panel A and Panel C will add testing for an additional 11 foods that are often a problem. The additional foods tested are corn, oats, rice, beef, chicken, pork, tuna, almond, walnut, cashew, and white potato. The combination test (A+C) is very popular among members here, and many members have resolved their symptoms by adjusting their diet based on their test results.

Tex

[barbiem]

thanks Tex - so when my GI dr says that she thinks my issue stems from a hypersensitive nerves in the gut and this drug should help settle it down - does this not make sense?? she thinks when I eat foods that cause the bacteria to go nuts like carbs, sugar etc that causes expansion in my colon which causes the nerves to go crazy and spasm causing thus diarrhea and the need to go all the time?

It makes sense to me seeing I have had IBS d for many years.

About Elavil - I thought it was SSRI 's that are the cause of most MC cases at least that is what is in the literature on line.

So I added in pork last night and have a very bad burning sensation this morning in my stomach along with nauseas. I have never had that before so it's either the pork or a week of Elavil that is causing this. I hate this guessing game!
I was on paxil for 16 years and went off it onto Prozac for the last year but went off that last dec thinking it was causing my problems. Really want to go back to paxil but after reading SSRi's cause MC I am leary and would rather be on Elavil as per the research. thoughts?

babs

[tex]

For probably close to a hundred years, doctors have been blaming digestive system problems on vague concepts such as "nervous stomach", "spastic colon", etc., and while those issues may be a part of the list of symptoms, they are definitely not the cause of MC. MC is caused by enteritis (inflammation of the intestines). Period.

Yes, carbs and sugar cause bloating and gas (because you can't digest them completely when your MC is active). That's why on this board we always recommend minimizing sugars and carbs during the recovery phase. Bloating and gas do not cause the nerves to go crazy, though. Bloating and gas cause diarrhea because bloating and gas are produced as undigested food rots in your gut. You have diarrhea because your gut contains rotten food that you couldn't digest, not because your nerves are upset.

IBS does not exist. The book contains an explanation of why that's true.

About Elavil - I thought it was SSRI 's that are the cause of most MC cases at least that is what is in the literature online.

No, the drugs that cause the most cases of MC are antibiotics and NSAIDs. Followed by PPIs, SSRIs, SNRIs, tricyclic antidepressants, beta blockers, bisphosphonates, statins, and others. Drugs are a major cause of MC. All of this is covered in the book.

thoughts?

You need to simply figure out whether the problem is the pork or the Elavil, and then get on with your recovery. We can't tell you which one is the problem — you have to figure that out by trial and error.

Tex

[barbiem]

thanks again Tex ! I had to stop the Elavil as the depression and crying was uncontrollable and worse in the morning ( I am assuming because I take the Elavil at night).

As for the pork I will be trying it again in 4 days.

In the meantime I am ordering the enterolab tests and also am thinking of the metametrix stool test for parasites etc. hopeful my sister will help with this.

Do you find that there is ever an imbalance in the microbiome with these tests (metametrix) or has anyone even done that testing?
thxs for the help
babs

[tex]

To be honest, I can remember reading about the results of many stool tests for parasites, but I don't remember whether any of them were done at that particular lab. Maybe someone else will have some information about the tests done at that lab.

Virtually all of the stool test results for parasites that I've seen posted on this board have been negative. I've seen some posts noting positive test results, but those were done prior to the development of MC, as best I can recall.

Tex

[Leah]

When my problems first started, the first thing my doctor did was test for parasites and bacteria. Negative. I have had a parasite about 10 years ago, and i can tell you that the symptoms don't wax and wane. It's D all the time no matter what is eaten.

We are all so different. I am not able to tolerate much fruit because of the fructose not being digested ( fermentation in the gut), but have always felt great eating white rice. It's a staple in my diet and definitely helps to keep my weight up. Same goes for cooked carrots and sweet potatoes. They are very soothing to my gut. Go figure….. however, I think most of my issues comes from histamines, so I take an Allegra in the AM and a Benadryl in the PM. Works for me.

I hope you figure this out soon though. it's a good idea to get the Enterolab tests. It seems like you need to get A and C because you really don't know what meats you are reacting to. Information is power. You will feel so much relief when you know for sure and can put a plan into play. Good luck Babs.

leah