HI from Holland!

[tex]

You're most welcome. I couldn't find the inactive ingredients, either. That product seems to maintain a pretty low profile on the internet. I guess that's why they can sell it so cheaply - they don't waste gazillions of dollars advertising it.

Good luck at that appointment.

Tex

[Kari]

Hi Gloria,

I have been following your search for a pure anti histamine with great interest, as I am also histamine intolerant (my latest discovery). However, like you, I cannot seem to tolerate the common antihistamine products, such as Claritin, Benedryl, etc., most likely due to the inactive ingredients. I called the Dollar Tree stores closest to me to see if they had Assured Antihistamine on their shelves. Well, one of them did, but when I had them read the list of inactive ingredients, I got very discouraged, as it seemed to be longer than Claritin's, including artificial colors - sigh. I have a feeling that a compounding pharmacy is the only hope for a pure product.

Anyhow, when searching the web for natural home remedies for histamine intolerance, I found that vitamin C comes up at the top of the list. So I have started taking vitamin C, along with avoiding the high histamine foods, and it seems to be helping. There are also several herbs that can help, and the one I have added to my cooking is Thyme. I had my acupuncturist double check me for histamine intolerance since I wanted to make 100% certain I was right, and sure enough, I am highly reactive to histamine. I'm hopeful that getting the histamine problem under control will be the final "major battle" on my road to recovery, and wish the same for you.

Love,
Kari

P.S. Here is a link to an article I found very instructive on natural antihistamines: http://www.buzzle.com/articles/natural- ... amine.html

[Gloria]

Thank you for the suggestions and the link, Kari. Also for checking on the Assured Antihistamine. I tried substituting ascorbic acid (vitamin C) for vinegar in my mock salad dressing a couple of years ago. It gave me mouth sores as did every other substitution. I could try it again; I would get the mouth sores immediately if they were going to appear.

I have been taking L-glutamine for 5 weeks. Similar to everything else, I improved (after 4 weeks) for a few days, then regressed and right now seem worse. I don't know if I'm reacting to the Claratin Reditab, but I only took two tablets, two days apart.

I am testing Nasalcrom, the nose spray version of cromolym sodium. It needs to be taken 4 times a day, 1/2 hour before meals. I'm not sure I'll be able to keep such a rigid schedule, but it's worth a try. If it provides some improvement, I will tell my GI and hope that he will prescribe Gastrocrom.

I can get one prescription before DH retires and we begin Medicare. It is very expensive and I don't believe that it is covered by Medicare or the Medicare part D drug plans. I haven't found it on AllDayChemist.com.

Here are the costs I've found for Gastrocrom:
Drugstore.com - 90 day supply: $4,342.68
NorthwestPharmacy.com (Canadian) - 90 day supply: $2,441.21

Through our present insurance:
Gastrocrom - 90 day supply: $90 (they claim their portion is $15,976.64)
Cromolyn sodium (generic) - 90 day supply: $10 (their portion is $7,810)

A compounding pharmacy would be much cheaper, I'm sure.

I hope you can tackle the antihistamine issue, too. It seems that many of us are dealing with mast cells now.

Gloria

[Kari]

Hi Gloria,

I went to my Natural Grocers to ask them for their best vitamin C supplement. They recommended "Royal Camu" by Whole World Botanicals, which is in a powder form. It is from a fruit, which I assume is "Royal Camu", also called "Myrciaria Dubia". The only other ingredient is Maltodextrine. It is "wildcrafted without pesticides or chemical fertilizers". Miraculously, I seem to do fine with it, and it is helping.

I tried L-glutamine after I read Connie's post, but had a horrible reaction - fortunately, I was able to return it to the store.

Can't remember if you have tried Histame. Anyhow, I ordered it a while ago and tried it for the first time today, and so far so good .

I haven't heard about Gastrocrom? However, I would not be able to consider it with that kind of a price tag. So far, I have been on my own with my treatment program - just don't feel like dealing with MD's.

Love,
Kari

[Gloria]

Kari--

I bought my vitamin C crystals from a health food store. I could try it again - one new thing at a time right now, though.

Yes, I have tried Histame. I've taken it 15 minutes prior to eating a food relatively high in histamine, such as avocado, but I don't take it regularly. I haven't noticed any difference when I take it, but it doesn't seem to be reactive for me.

I stopped taking the L-glutamine yesterday. I'm waiting to see if I have any change.

Nasalcrom has the same main ingredient as Gastrocom - cromolyn sodium - but it costs much less (about $9 for 25 days worth) and can be purchased OTC. The box says it is full strength. It's too soon for me to report on its effectiveness. Arlene (toomanyhats) thought it helped her quite a bit.

I don't like dealing with my GI either. This will be my first visit to him in 20 months. I'm hoping he'll give me another Entocort prescription renewal, though it's helping me very little. I'm curious if he's ever looked into MCAD. I left him a paper on it during my last appointment. My PCP doesn't want to deal with my MC. I don't want to deal with it anymore, either.

Gloria

[tex]

Yes, I have tried Histame. I've taken it 15 minutes prior to eating a food relatively high in histamine, such as avocado, but I don't take it regularly. I haven't noticed any difference when I take it, but it doesn't seem to be reactive for me.

These are just my own thoughts, and I could be all wet, but FWIW, I would think that you would need to use an antihistamine for that job, (neutralizing a high-histamine food), and even an antihistamine may not be up to the job, because it may be overwhelmed by a high-histamine food. I could be wrong, but I get the impression that DAO helps to keep histamine levels from building up, by doing regular "housekeeping chores" to reduce surplus buildups. IOW, it works on an incremental basis, (a little each day, to prevent a long-term buildup. I would assume that histame would perform similarly. IOW, I suspect that either would be overwhelmed by a high-histamine food, because of the spike in the histamine level.

Histamine completes the activation cycle in a matter of minutes. By the time the histame could make much of a dent in the histamine spike, the damage would be done, because much of the histamine would have already found an H1 receptor, and "attached", thus completing the reaction. The reason why an antihistamine works, is because if taken before a meal, within a matter of minutes, it should be able to seek out, and "attach" to a high percentage of the available H1 receptors, (on mast cells), thus removing them from the competition. IOW, once the antihistamine "attaches" to a receptor, the histamine from the high-histamine food can't attach to that receptor, and with any luck at all, enough receptors may no longer be available, such that much of the histamine may not be able to locate an "unattached" receptor before it expires, or before DAO, (or histame), takes it out of circulation.

Mast cell stabilizers, (such as cromolyn sodium), help to stabilize the membranes of mast cells, and thereby help to prevent them from releasing histamine, but that won't work against a high-histamine food, obviously, because that histamine is already free, and a mast cell stabilizer won't be able to do anything about it.

Tex

[Gloria]

Thanks for the explanation, Tex. You are gifted in being able to take the complex and make it simple and understandable. You must have been a terrific teacher, and you are still using your talent without pay here. I'm sure your book will enlighten the most confused MC patient and hopefully some confused physicians.

Gloria

[tex]

I'm sure your book will enlighten the most confused MC patient and hopefully some confused physicians.

Thanks, I sure hope you're right.

Tex

[henrym]

Hi everyone! It's been a while since I've posted. The past months I have been tapering down Entocort (very slowly!) with good results. One month ago I felt I was ready to completely stop taking it. This time I really am determined to succeed to stay of the medications! That's why I would like some advice on my diet.
I decided to start following a simple diet to detect which foods are still triggering the inflammation. It mainly consists of beef patty's (morning time), plantains, sweet potatoes, lot's of banana's, avocados, bone broths (from beef), turkey, meatloaf with liver , applesauce and overcooked vegetables. I make sure I cook everything from scratch and am not using spices or nightshades to trigger anything. So no grains, lactose, casein, soy, eggs, coffee, chocolate, lettuce, etc I also stopped taking supplements like Vit D, magnesium and B12 to be sure..
What I've noticed is that my bowel movements have slowed down to the point that I hardly have one bowel movement a day and some days I am constipated with occasional D. I am not sure what causes this. I am slowly trying to introduce other foods, for instance chicken, pork and fish. But I am not sure about them. I feel like chicken is a no go. So I stopped trying it. But with other meats it's really hard to tell. Too bad I can't do the EnteroLab test since I'm in Europe (and because of money factors).
I would appreciate some help on my diet. What I am doing wrong, what else I can introduce, etc.


Thanks a lot!

Greetings from Germany
Henry

[Gabes-Apg]

Henry,
Greetings from Australia. Congrats on the World Cup win!

I too have had episodes of c, and then D. For a long period of time my BM's were either painful C, or MC Mud. It is an indicator of inflammation.

It may not be food related or totally food related. , it could more histamine related. Have you read the posts about histamines/mast cells? It is a very common issue for MC'ers.

I have never done enterolab testing, listening to my body, keeping a journal of food/activity/stress factors with symptoms, I could determine situations or locations that caused issues.

Change of season, pollens, mould, etc etc can trigger histamine reaction.
Having anaesthetic or dental work can trigger them too.
Try some mc safe antihistamines and if the BM 's improve, then you know it is histamine related inflammation.

Re the diet, one thing I found, what worked 3 years ago, may hot work so well now. Especially given the small number of ingredients you are having.
A lot of people do rotation system, small amount of ingredients each day, but changing the ingredients every couple of days.
Keep in mind, if there is something you have not eaten for a year or more, and you have it, it will cause a reaction. Our digestion is like that of a baby/toddler, any new ingredient will affect the BM. To gauge if something is ok or not, you have small serving, no more than 1/4 cup, once a day for three days. If after the third day there are no symptoms, it is ok. If you have symptoms, ie change in Bm's, pain, gas etc, then it is causing inflammation.
Take your time with changes.

Hope this helps.

[fatbuster205]

Hi Henry!
Welcome although I am sad that you are here because of your condition! But you have come to the right place because the people here are amazing! Fatigue - OMG!!!! Did I suffer badly! Joint pain - oh yes! And as to D - enough said! LOL! Just posted myself after a good run!!! Take heart and seriously gluten and dairy - NO!!! It took me a long time to go down that route, mainly because I needed to educate my doctors and get their support! Which is why it is disappointing to be possibly having a mini relapse!! BUT I did a YorkTest which would maybe help in the short term to determine any food intolerances! I haven't done the Enterolab tests yet - but I may well do in the future! But for me it identified gluten, casein and yeast (the latter borderline). YorkTest (you can google it) costs c£300 but is worth it! However, it is not as sensitive as the Enterolab test that Tex recommends - I just don't feel my symptoms are so bad to do it! As to the Coeliac test - I too was " reassuringly healthy" quote my consultant! But YT came back positive for G and D! Read as much as you can here - this is the best place to be able to be graphically frank, share embarrassments, jokes (and there are some really funny ones!!) but most importantly know you are not alone!!! Hopefully you will be on the road to recovery soon!
Anne

[henrym]

Thanks Gabes and Anne!

@Gabes.. Since I am Dutch I would have liked to see the Dutch go into the finals and beat the Germans but in the end they deserved to win.
@Anne.. I know what you mean about the fatigue and joint pain problems. They still bother me..

When I stopped using Entocort last month I started this minimal diet. Before that I ate GF breads, eggs, all meats, vegetables, nightshade's etc. Just no gluten, lactose, casein and soy.
So right now I feel I am extra careful and still am not there yet. But I feel more 'control' than last time I stopped Entocort.
I will try using histamine pills (I have some mc friendly laying around) and see if that helps.


Henry

[tex]

Henry,

When one stops using budesonide, there is a rebound effect as mast cell populations rebuild, and they often overshoot the original numbers. That creates an unstable condition that can lead to unexplained symptoms, caused by excess histamine in the digestive system. As Gabes suggested, many members here find that an antihistamine or 2 each day can be very helpful, especially during the first few weeks after discontinuing budesonide.

As she mentioned, if you see a significant improvement after taking antihistamines, then you may need to try to minimize the amount of high-histamine foods in your diet. For example, bananas are considered to be a high-histamine food, but actually their histamine level is not particularly high when they are barely ripe. But as they continue to ripen, for each day that passes, their histamine level continues to rise until they soon become a high-histamine food. IOW, aged or fermented foods are high in histamine, most fresh foods are not. Even leftovers stored in the refrigerator continue to gain histamine with each passing day. Freezing leftovers stops histamine development.

You seem to be pretty much on track with your diet, so hopefully you will soon stabilize. Keeping a food/reaction diary can be very helpful for tracking down food problems.

Tex

[henrym]

Thanks Tex!

The anti-histamines sure do make a difference!
I need to find a German version of allegra though since the benadryl makes me spaced out throughout the day. So far I only found versions that contain lactose though..

Henry

[tex]

Henry,

That's good news that an antihistamine is helping. Benedryl is effective, but as you have discovered, it tends to cause drowsiness, so most people who use it, take it at night, and/or they take a non-drowsy antihistamine in the morning. You're probably aware that the active ingredient in Allegra is fexofenadine (Fexofenadin in German).

http://www.drugs.com/international/fexo ... andoz.html

http://www.drugs.com/international/fexo ... hexal.html

Please be aware that it isn't just corticosteroids that cause a rebound effect. Many medications have that problem, including antihistamines. That means that you may need to taper your doses of Fexofenadin in order to wean off it if you take it for an extended period of time.

antihistamine warning

Tex