Hello All!!
I've always been the "lurker" who would scan these boards during times of flare-ups but never posts. I was always good at gleaning information and using it for my benefit. So THANK YOU ! Obviously I am having a flare-up or else I wouldn't be posting, right? I think it has something to do with my recent withdrawal from antacids. Little background:
Seems like I've had GI problems since the beginning of time. I remember my mother taking me to the Dr. even at the age of 4 for issues with diarrhea. I've always had a very active GI tract and I cannot remember a single time in my life being constipated. I've also ALWAYS been thin and skinny due to GI issues. At age 15 I was diagnosed with Hashimoto's hypothyroidism and started on levothyroxine. At age 18 I had a cholecystectomy due to gallstones. At age 21 I traveled and studied in Africa and picked up entamoeba histolytica as well as typhoid fever. Both were treated appropriately but I have never been the same since. Age 22 started getting severe GERD and was put on continual PPI's (ack,..... stupid Dr.) Age 24 I start Veterinary School and the STRESS of it is a huge factor in triggering the worst Diarrhea I had ever had. Started to have up to 20 episodes a day as well as nocturnal d for the first time ever. Finally visited a GI doc and dx'd with MC at age 24. Immediately found this online support group and went GF. Found some relief but never really truly cleared up. I am now 33 years old and a practicing Veterinarian for quite some time (didn't let this damn disease keep me down), but I have been having bad D off and on for years. Interesting side note: my father was also dx with MC around the same time I was. We suffer together. He is a physician himself and agrees that Western GI docs are idiots when it comes to treating IBD.
I recently bought and read the bible on MC (thank you Wayne Persky) and have been GF, DF, and soy free. Then I made the decision to transfer from PPI's to pepcid because of all the bad info on PPIs. Realized that i would occasionally forget to take the pepcid and I WOULD NOT get GERD!!! It was amazing. When I would forget to take the PPI's I would get the worse reflux ever. But not when i forgot to take the pepcid. So it was a simple solution. I stopped taking any antacid at all and my GERD is gone!! However, it has been replaced with some horrible diarrhea. This is the only thing that I have changed routine-wise. Also noticed this summer that my hay fever was worse than usual (I am allergic to everything) and I started getting eczema for the first time ever (Why???).
Has anybody had any experience with this?? Stopping the antacids once and for all (after being on them for years) and getting horrible d?? I have never had to take any steroids for my MC before (well..... really I've just refused taking them because I know all too well the side effects of steroids) but I may have to eventually cave and take some budesonide.
Any input would be helpful. I am halfway tempted to start taking the pecid somewhat again if it brings me relief of D. Thanks again for having this support group. This damn disease is such a pain in the arse - literally.
newbie to this board, but unfortunately not to this damn MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Constant,
First of all, congratulations on sticking with your goals, earning your degrees, and successfully establishing a practice. That's quite an accomplishment when MC is part of the equation. I'm sorry that you have a reason to post, but I'm glad that you raised this issue, because I have a hunch that you are probably not the only one having to deal with it. I hope that we can shed some light on the problems that you are having.
Antihistamines are interesting medications. There are many, many different products that have histamine antagonist properties, many of which most people don't even realize are antihistamines (such as tricyclic antidepressants, for example). To cut to the chase, I have a hunch that the basis of your problem is a rebound effect apparently caused by antihistamines, that as far as I am aware, is pretty much off the radar of the mainstream medical community.
For many years I thought that antihistamines were one of the very rare medications that were free of side effects. But recently we have discovered (by personal experience) that antihistamines have a dark side. Like PPIs, corticosteroids, and probably countless other meds, they tend to cause a rebound effect. And apparently the longer we use them, the stronger the rebound effect.
Of course by rebound effect I mean that after their use is discontinued, they tend to cause the very symptoms that they are used to treat. IOW, in the case of antihistamines, if they are used to treat uricaria or pruritus, terminating their use will result in a return of urticaria or pruritus symptoms. We know (by personal experience) that this is true for H1 antihistamines, so I am going to speculate (based on your symptoms) that the same thing can happen with H2 antihistamines.
In the case of H1 antihistamines, I resolved the problem by withdrawing more slowly from the treatment (rather than quitting cold turkey). I was using fexofenadine (Allegra) to control the symptoms of spring pollen. Just about the time when I no longer needed it for pollen allergies, I stumbled into a bad case of chigger bites, so I continued to use it for a while to reduce the itching problem. But when I tried to stop using the Allegra, the sites of some of the chigger bites reappeared, inflamed and itching like mad. Taking the fexofenadine would control the symptoms, but whenever I stopped taking it, the problem reappeared. As I mentioned above, I finally resolved the problem by tolerating the symptoms as I took a pill every other day, and then every third day, before stopping completely.
Other members here have reported similar experiences with both fexofenadine and loratadine, so I have a hunch that it may be a global issue with antihistamines.
One other comment — your mention of eczema (but not the increased hay fever symptoms) raises the possibility of diet cross-contamination. Please check your diet and anything that you might use on your skin to make sure that it does not contain any source of gluten (wheat), hordein (barley), secalin (rye), or avenin (oats). I suspect that it might also be possible that your increased hay fever severity and eczema might be due to a rebound effect after taking a PPI and then Pepsid for years and then discontinuing it.
But these are uncharted waters, and as you are aware, I'm not a doctor. Most of this falls under the category of mast cell issues, and unfortunately, it appears that mast cell issues are very poorly understood by the mainstream medical community.
Like your father, I never cease to be amazed that vets seem to know so much more about treating IBDs and food sensitivities than mainstream MDs. I hope that some of this is helpful, and thank you for the kind words.
Tex
First of all, congratulations on sticking with your goals, earning your degrees, and successfully establishing a practice. That's quite an accomplishment when MC is part of the equation. I'm sorry that you have a reason to post, but I'm glad that you raised this issue, because I have a hunch that you are probably not the only one having to deal with it. I hope that we can shed some light on the problems that you are having.
Antihistamines are interesting medications. There are many, many different products that have histamine antagonist properties, many of which most people don't even realize are antihistamines (such as tricyclic antidepressants, for example). To cut to the chase, I have a hunch that the basis of your problem is a rebound effect apparently caused by antihistamines, that as far as I am aware, is pretty much off the radar of the mainstream medical community.
For many years I thought that antihistamines were one of the very rare medications that were free of side effects. But recently we have discovered (by personal experience) that antihistamines have a dark side. Like PPIs, corticosteroids, and probably countless other meds, they tend to cause a rebound effect. And apparently the longer we use them, the stronger the rebound effect.
Of course by rebound effect I mean that after their use is discontinued, they tend to cause the very symptoms that they are used to treat. IOW, in the case of antihistamines, if they are used to treat uricaria or pruritus, terminating their use will result in a return of urticaria or pruritus symptoms. We know (by personal experience) that this is true for H1 antihistamines, so I am going to speculate (based on your symptoms) that the same thing can happen with H2 antihistamines.
In the case of H1 antihistamines, I resolved the problem by withdrawing more slowly from the treatment (rather than quitting cold turkey). I was using fexofenadine (Allegra) to control the symptoms of spring pollen. Just about the time when I no longer needed it for pollen allergies, I stumbled into a bad case of chigger bites, so I continued to use it for a while to reduce the itching problem. But when I tried to stop using the Allegra, the sites of some of the chigger bites reappeared, inflamed and itching like mad. Taking the fexofenadine would control the symptoms, but whenever I stopped taking it, the problem reappeared. As I mentioned above, I finally resolved the problem by tolerating the symptoms as I took a pill every other day, and then every third day, before stopping completely.
Other members here have reported similar experiences with both fexofenadine and loratadine, so I have a hunch that it may be a global issue with antihistamines.
One other comment — your mention of eczema (but not the increased hay fever symptoms) raises the possibility of diet cross-contamination. Please check your diet and anything that you might use on your skin to make sure that it does not contain any source of gluten (wheat), hordein (barley), secalin (rye), or avenin (oats). I suspect that it might also be possible that your increased hay fever severity and eczema might be due to a rebound effect after taking a PPI and then Pepsid for years and then discontinuing it.
But these are uncharted waters, and as you are aware, I'm not a doctor. Most of this falls under the category of mast cell issues, and unfortunately, it appears that mast cell issues are very poorly understood by the mainstream medical community.
Like your father, I never cease to be amazed that vets seem to know so much more about treating IBDs and food sensitivities than mainstream MDs. I hope that some of this is helpful, and thank you for the kind words.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
HI Constant,
I'm sure you've read up on Entocort. I'll throw my 2 cents in here-- I found Entocort very helpful and because it doesn't open up until it reaches the intestines your body absorbs very little of it. I took it for 4 1/2 months and had no trouble getting off of it when it was time. It 'bought me time' to sort out my food sensitivities and by the time I had to discontinue it, I didn't relapse. I would recommend it if you find that your MC interferes with life too much. In my case it helped me to be able to get back to work full time. I stopped dropping weight so quickly and was able to get stabilized, so I could focus on getting adequate calories (which stopped the dizziness and weakness). Overall I found it to be very helpful. Of course Entocort won't help you heal-- only the diet changes do that. But for me Entocort slowed the progression of the inflammation and resulting illness so I could start getting on top of this disease.
Welcome to the board. I too am impressed that you managed to reach your goals while dealing with MC.
Carol
I'm sure you've read up on Entocort. I'll throw my 2 cents in here-- I found Entocort very helpful and because it doesn't open up until it reaches the intestines your body absorbs very little of it. I took it for 4 1/2 months and had no trouble getting off of it when it was time. It 'bought me time' to sort out my food sensitivities and by the time I had to discontinue it, I didn't relapse. I would recommend it if you find that your MC interferes with life too much. In my case it helped me to be able to get back to work full time. I stopped dropping weight so quickly and was able to get stabilized, so I could focus on getting adequate calories (which stopped the dizziness and weakness). Overall I found it to be very helpful. Of course Entocort won't help you heal-- only the diet changes do that. But for me Entocort slowed the progression of the inflammation and resulting illness so I could start getting on top of this disease.
Welcome to the board. I too am impressed that you managed to reach your goals while dealing with MC.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Constant. I agree with Carol. I took it for 6 months, slowly weaning off of it as my symptoms got better…… but histamines do seem to be an issue with you. I also have histamine problems. About a year after being off Budesonide, I noticed that although I was only having one BM a day, it was loose. So, I decided to take an OTC antihistamine ( Alegra) and low and behold, my stool was normal! The same for the next day and the next. So, now I take one Allegra in the am and one Benadryl in the pm and I'm pretty darn good. If you don't like the idea of taking more drugs, then you might want to look up a list of high histamine foods and stay away from them. Leftover meats are really high, so I don't eat any cooked protein that is older then 24 hours. Same goes for homemade broth and soups. Wine is also really high. There is a long list.
Good luck
leah
Good luck
leah
Thank you for all of your input! Yes, I agree that histamine issues as well as mast cell issues are probably at play here considering my history of eczema and hay fever. I really wish my GI doc would have checked for mast cells during my last colonoscopy and endoscopy. Did I mention that ALL sections of my small intestinal tract were also chock full of lymphocytes along with my colon?? So pathologically speaking it should be called "microscopic enterocolitis." But I digress.
I also recently found out that I am hetero for the MTHFR mutation. Apparently this makes it harder for my body to break down histamine. I might try adding in the "Histame" diamine oxidase enzyme with my meals and see if this makes a difference. Every day is different for me. It seems like just as soon as I've had a couple of horrible days they will be followed by a good one.
Once again, thanks for all the input!
I also recently found out that I am hetero for the MTHFR mutation. Apparently this makes it harder for my body to break down histamine. I might try adding in the "Histame" diamine oxidase enzyme with my meals and see if this makes a difference. Every day is different for me. It seems like just as soon as I've had a couple of horrible days they will be followed by a good one.
Once again, thanks for all the input!
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi there,
I am another who had digestion issues since birth.
The eczema can be linked to multiple things, linkage to MTHFR issues, inflammation in the gut, histamines etc.
For the gerd, mc, eczema, the following would help;
Good doses of Vit D3, if you can get your level tested it will help to guide on dosage. Most here take 2000iu to 5000iu per day, more if they are deficient/ have ongoing inflammation / have ongoing stress.
Magnesium is also very good for all three, there magnesium lotions and sprays (not very expensive) that allow application of high doses of magnesium without laxative effect.
Vit C, zinc, will also help gut, skin, histamine inflammation.
Are you seeing a practitioner for the MTHFR, and getting guidance on corrections? It might be useful to get the hair mineral/metal analysis to help identify issues so you can correct any deficiencies.
Hope this helps.
I am another who had digestion issues since birth.
The eczema can be linked to multiple things, linkage to MTHFR issues, inflammation in the gut, histamines etc.
For the gerd, mc, eczema, the following would help;
Good doses of Vit D3, if you can get your level tested it will help to guide on dosage. Most here take 2000iu to 5000iu per day, more if they are deficient/ have ongoing inflammation / have ongoing stress.
Magnesium is also very good for all three, there magnesium lotions and sprays (not very expensive) that allow application of high doses of magnesium without laxative effect.
Vit C, zinc, will also help gut, skin, histamine inflammation.
Are you seeing a practitioner for the MTHFR, and getting guidance on corrections? It might be useful to get the hair mineral/metal analysis to help identify issues so you can correct any deficiencies.
Hope this helps.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
your hands full!
You certainly have your hands full!
I am a newby to this forum and just finished reading the "bible". Six decades of digestive issues. But more about that later.
Allergies have been a problem since youth but I have them under control now. You might want to try taking Quercetin or Quercetin Complex (w/bromelain) - one first thing in the morning and one in late afternoon. In the case of seasonal allergies, start taking a couple of weeks before the expected problem. Sometimes I still have to take Allegra, but rarely.
I am intrigued to hear about the histamine effect - very new to me. Am I making a mistake NOT using Benadryl/Allegra??
Best of luck!
I am a newby to this forum and just finished reading the "bible". Six decades of digestive issues. But more about that later.
Allergies have been a problem since youth but I have them under control now. You might want to try taking Quercetin or Quercetin Complex (w/bromelain) - one first thing in the morning and one in late afternoon. In the case of seasonal allergies, start taking a couple of weeks before the expected problem. Sometimes I still have to take Allegra, but rarely.
I am intrigued to hear about the histamine effect - very new to me. Am I making a mistake NOT using Benadryl/Allegra??
Best of luck!