Trying not to be obsessed and frustrated

[Thumbs]

It looks like I was not able to stop the flare so the MD had me resume 9mg a day. I asked him about amitrypaline (spelling?) and he said no to that drug. I asked about histamine issues and he said that he has never seen the research come back with difinitive information. He said he has sent many to the allergist without success. I asked about foods and said I could eat lamb and rice for 5 weeks... He offered the sulfa zone drugs once I was stable again. That being said.. He's a great MD in the sense he always calls me right back, he listens, he doesn't totally disregard my thoughts and says go for the food if you want to, he is sympathetic and kind. So if long term Entocort is my current situation while I try to figure more things out.. I asked him and he said that cataracts and bone loss are the major long term effects. I know at some point you have mentioned the long term situation for Entocort if you are on it and stay on it you have less long term effects, generally. Does that still count if you taper up and down on occasion? I think the flare was. A result of yeast medication and peanut butter/bean category. Do you think a natural mood lifter such as Deproloft/Thorne would also help Gi issues? Ideas on my supplements - do I stop them all? I take a E combo/ Vit D/colostrum/ and adv adrenal support? Writing this while kids in lap sorry for misspellings.

[sunny]

Boy! I hear your frustration! Sounds like you have a good doc but one who is not clued in to food sensitivities...
I remember Tex discussing the topic of entocort long term...he'll chime in I'm sure. It's confusing to hear of some docs who give amitriptyline & others say no. Mine said to wait to see if new thyroid med will help.. I thot, .whaaaat?...
Haven't hear about Deproloft..will look for that answer when u get it.
Hoping the rice/lamb does the trick...
sunny

[JenniferS]

I'm on budesonide, the full dose, and have been for over a year. My GI will be regularly checking my bone density. Seems maybe a good idea for those who remain on budesonide for long term? I think the tough part is, as my GI flat out told me at my last apt., "We don't know much about this disease." Although she said they hope to know more in two or three years. :)

[tex]

I asked about histamine issues and he said that he has never seen the research come back with difinitive information.

You can find a list of links to some definitive research articles at the end of this post.

He said he has sent many to the allergist without success.

He is quite correct. There are precious few allergists who know anything about mast cells and histamine issues associated with digestive system issues. There's a list of the few qualified experts on mast cells at the very end of the article at this link:

Mast Cells and GI Motility Disease

We have our own list here:

List Of Doctors Very Helpful For Treating Mast Cell Issues

I know at some point you have mentioned the long term situation for Entocort if you are on it and stay on it you have less long term effects, generally. Does that still count if you taper up and down on occasion?

As far as I am aware, changing the dose shouldn't matter. Completely stopping and restarting does matter, and doing this also reduces the effectiveness of budesonide each time it is done. If you need a medical reference on that I can look one up and post it (there's one listed in my book).

I think the flare was. A result of yeast medication and peanut butter/bean category.

Antibiotics are notorious for triggering MC flares, so it's certainly possible that fungicides could also have that effect in some cases. Most of us who are sensitive to soy are also sensitive to most legumes (including peanuts and beans).

Do you think a natural mood lifter such as Deproloft/Thorne would also help Gi issues?

I'm not familiar with that product, but generally the fewer supplements we take, the better our chances of achieving remission.

Ideas on my supplements - do I stop them all?

Vitamin D is very important (and some of us may need vitamin B-12), but most of us do better if we postpone taking any other supplements until we are in stable remission.

Here are some mast cell/histamine research articles for your doctor:

Mast Cells in Gastrointestinal Disease

Histamine and histamine intolerance

Mast cell activation syndrome: A newly recognized disorder with systemic clinical manifestations

Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options

And the article that was mentioned above in response to your doctor's comment about allergists:

Mast Cells and GI Motility Disease

Tex

[UkuleleLady]

Jennifer: Amazing to hear a GI admit that they don't know much about something.

Thumbs, I went to a psychiatrist to ask for amitriptyline, and after some trial and error, I switched to remeron. It's helping me, but your mileage may vary with tricyclics. My GI was adamant in not treating me with ADs so I went elsewhere, and "cleared" it with the nurse via a phonecall to appease my psych.

I went into the psych with my biopsy report and tale of woe, and also the idea that I wanted to try amitriptyline (elavil) in the low dose that some people here use. He was open to trying that and seeing how it goes to see if it helped my quality of life.

You may or may not pursue it further but just wanted to tell you what I did.

[tex]

Thumbs,

After seeing Nancy's post it reminded me that in my previous post, I forgot to address the amitriptyline issue that you mentioned concerning your doctor.

The reason why your doctor was so opposed to prescribing Elavil is presumably because the drug is notoriously difficult to wean off of, after you have been on it for a while at a dose typically used for treating depression. IOW, after you used it for a while (at a dosage used to treat depression), you would be very likely to end up taking it for the rest of your life, because it is very difficult to stop using.

By contrast, the doses we are talking about here, when using it to help modulate motility, are only a fraction of normal therapeutic doses. Most members here who use Elavil to benefit their MC, are using only a 10 mg dose. At that level, no one is likely to develop a dependency on the drug, so it can usually be discontinued and/or restarted as needed.

Tex

[Thumbs]

Thank you for the information. I think being armed with information would be beneficial and he might be more inclined to think outside the box. I have your book too but I don't have it earmarked enough yet to share with the MD. I need to review it more often but sometimes my easy fictional stories win that battle.

I think my regular MD might work with me, I didn't think about that... Hmm.

[Thumbs]

I forgot - my mom takes 10mg for headaches and she thinks maybe that she was told she had celiac at the same time she got Breast cancer but is not totally sure as it was such an overwhelming time. She does not have bowel symptoms but has Hashimotos and Breast cancer (7 year survivor) Anyway I was thinking the 10mg is why she doesn't have bowel symptoms and why it could help me along with the food eliminations. It would be funny that he would leave me on Entocort for life but not another drug but I am sure he has a method to his madness.

[tex]

Yes, PCPs are often easier to work with, and they tend to be more considerate of their patient's needs than the average specialist. And I agree that many doctors tend to have a peculiar attitude about certain medications, especially GI docs.

Some celiacs are just asymptomatic. In some cases, neurological symptoms are the first symptoms to present. And in some cases, the only clinical symptoms are neurological, and GI symptoms never develop. Here's a link to an excellent article that discusses the neurological side of celiac disease, written by the foremost researcher on the neurological effects of celiac disease, Dr. Mario Hadjivassiliou:

http://jnnp.bmj.com/content/72/5/560.full

Tex

[MBombardier]

Something you may consider is St. John's Wort. I was taking three capsules in the morning and feeling better about things. Then I thought it wasn't helping me anymore, and so when I ran out I stopped taking it. That's when I discovered it really was helping me, even though I didn't feel "happy" as I had in the beginning, so I am seriously considering taking it again.

Coincidentally, I read this article just a few minutes ago: New Insight Into How Antidepressants Work in the Brain http://www.sciencedaily.com/releases/20 ... 091339.htm

[Thumbs]

Deproloft has St. John's as one of the ingredients. I might give it a shot unless Tex or another member says these other ingredients are suspect?

Two Capsules Contain:
Vitamin C (as Ascorbic Acid) 250 mg
Vitamin B6 (as Pyridoxal 5'-Phosphate) 5 mg
Folate (as L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid, Glucosamine Salt) 400 mcg
Vitamin B12 (as Methylcobalamin) 550 mcg
Pantothenic Acid (as Pantethine)* 130 mg
Iodine (as Potassium Iodide) 68 mcg
L-Tyrosine 200 mg
5-Hydroxytryptophan 50 mg
Eleuthero extract (root) (Eleutherococcus senticosus) 50 mg
Gamma-Aminobutyric Acid (GABA)** 50 mg
Rhodiola extract (root) (Rhodiola rosea) 50 mg

[tex]

If you happen to be sensitive to corn, ascorbic acid can be a problem (it's made from corn), otherwise the first 6 ingredients should be OK. I'm not familiar with the last 5 ingredients. If you're lucky it may work OK, if not . . .

IMO, in general, when a processed product of any kind (whether a food or a pharmaceutical product) contains that many ingredients, the odds are relatively high that one or more of the ingredients (or a certain combination of ingredients) will cause problems for many/most of us. This falls under the "more is less" rule regarding treatment programs for MC.

If you look at the very limited food options that some of us have, that should provide an indication of how few options we may have in the selection of supplements and other pharmaceuticals, also.

Tex