Hello everyone,
Have had MC diagnosed now for about 4-5 months and have done fairly well with first month on Entocort and then followed by GF/DF/SF/Egg free diet. I have had maybe a total of 3 flares over this time mainly because I am still learning the ins and outs of the diet. (Soy has definitely been the hardest one to control) During each time I could relate it to what the food was that I ate that set me off. Luckily I have never had the massive amounts of D that some here have although my stools would get somewhat looser. My symptoms simply seem to be abdominal pain and bloating. Having said that the first two times, I would take Pepto a few times a day and some Tylenol PM to help me sleep at night and I would do just fine. This last mini-flare has been harder to treat and it seems like it is taking longer. I have taken a PPI the last 3 days because of the dyspepsia (which I now believe to be from the flared MC, and today my dyspepsia was the worst it has been (no more of those ever again)
I saw my GI early last week, when I was having a very good couple of days, and we had a very good visit. He seemed to be very pleased I was working on my diet, and very interested in Dr. Fine's findings from my Enterolab. He actually asked for the 5 page copy of Dr. Fine's position paper on diet and MC that is on his website. He was even more excited to hear that Mountain Dew has soy in it (I told him I used to be a big Diet Mountain Dew drinker until this diet and he says he was going to look into this more as he has many teens that he sees in his practice presumably with pain who drink the Dew.) I think I am going to have to call him back tommorrow, tell him about my flare and request to do Entocort again for another month just to sort of jump start me since I am in a flared state. I lost alot of weight initially changing my diet, but it seems when I go through another flare, I lose more weight and then I stabilize after my stomach pain goes away. I just ordered a vitamin/calcium/probiotic pill and some omega pills off of Celiac. com because I truly don't believe I am getting enough of those things.
A few questions:
Have we been able to narrow down what actual abdominal symptom goes with each sensitivity? For instance, does soy cause different sx''s compared to dairy?
Do the gas x pills contain soy in them? I would like to take them because they help my bloating, but the walgreen's says glycerin and I know that can contain soy sometimes but not always
What about lunch and deli meats and other types of meat in the store. I know I need to keep up on my protein, and yet I am scared that I haven't been diligent enough with the deli in investigating what is in the meats.
By the way when I get flared up I get a lot of upper back discomfort. Does anyone know the referral patterns for the intestines. I am sure they are related.
Any thoughts or comments would be greatly appreciated
PS My wife has also been gluten free now for about 2=3 years secondary to IBS and our youngest daughter started getting GERD and indigestion for the past several months, even before I got my initial attack. She would come in and ask for a Tums all the time. We started her GF/DF and her symptoms have almost vanished, even her headaches. My GI said that seemed like classic Celiac disease for kids her age.
A setback and some question
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It sounds as though your doctor, (and his other patients), is/are benefiting from treating you. He seems to be much more open-minded than most GI docs. Good for him.
As far as I am aware, Gas-X does not contain any soy derivatives. It does contain the sugar alcohol mannitol, which can be a problem for some of us, if we get too much of it, but often, the small amount in such pills, is not enough to cause any problems.
Deli meats as a group, tend to be riskier than most unprocessed meats, because they often contain a significant number of ingredients, some of which can cause problems for some of us. Boar's Head brand is one that is often cited as having many deli products that are safe for most of us.
I usually had upper back pain during reactions, also, and I believe that's a fairly common symptom for many members here.
That sure does sound like celiac disease symptoms that your daughter was having. The fact that the diet has even eliminated her headaches, is very strong evidence that your hunch was right. Gluten-sensitivity seems to be unusually prevalent in your family, but at least that makes it easier to avoid gluten, if you don't have any reason for even bringing it into the house. If your youngest daughter is still having any problems with GERD, vitamin D can help to prevent it. Gluten-sensitivity can lead to malabsorption problems, so that many of us tend to be low on vitamin D, also. Low vitamin D is known to predispose to inflammatory bowel disease, and IBDs tend to deplete vitamin D levels, so it behooves us to keep our vitamin D levels up, since low vitamin D levels are widely associated with IBDs, (including MC).
If you can eliminate all the problem foods from your diet, in the long range that should eliminate the gas and bloating, so eventually, you shouldn't need any more Gas-X. All in all, you seem to be coming along very well with the diet, and I hope that you continue to improve.
Thanks for the update,
Tex
Not specifically, because each of us typically has our own reaction patterns. Some of us, though, get to a point where we can notice a different reaction pattern for certain food-sensitivities. Casein is one of the easier ones, because for many of us, it causes what we refer to as "battery acid" D.Have we been able to narrow down what actual abdominal symptom goes with each sensitivity? For instance, does soy cause different sx''s compared to dairy?
As far as I am aware, Gas-X does not contain any soy derivatives. It does contain the sugar alcohol mannitol, which can be a problem for some of us, if we get too much of it, but often, the small amount in such pills, is not enough to cause any problems.
Deli meats as a group, tend to be riskier than most unprocessed meats, because they often contain a significant number of ingredients, some of which can cause problems for some of us. Boar's Head brand is one that is often cited as having many deli products that are safe for most of us.
I usually had upper back pain during reactions, also, and I believe that's a fairly common symptom for many members here.
That sure does sound like celiac disease symptoms that your daughter was having. The fact that the diet has even eliminated her headaches, is very strong evidence that your hunch was right. Gluten-sensitivity seems to be unusually prevalent in your family, but at least that makes it easier to avoid gluten, if you don't have any reason for even bringing it into the house. If your youngest daughter is still having any problems with GERD, vitamin D can help to prevent it. Gluten-sensitivity can lead to malabsorption problems, so that many of us tend to be low on vitamin D, also. Low vitamin D is known to predispose to inflammatory bowel disease, and IBDs tend to deplete vitamin D levels, so it behooves us to keep our vitamin D levels up, since low vitamin D levels are widely associated with IBDs, (including MC).
If you can eliminate all the problem foods from your diet, in the long range that should eliminate the gas and bloating, so eventually, you shouldn't need any more Gas-X. All in all, you seem to be coming along very well with the diet, and I hope that you continue to improve.
Thanks for the update,
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 Marcia,
To be honest, I never eat deli meats anymore, so I've never tried any of the Boar's Head products, but in the early days of this board, they were highly recommended by various members, so I was just basing my opinion on out-of-date information, apparently.
Thanks for the heads up. I appreciate the updated information. It's a shame that we've lost another source of safe products.
Tex
To be honest, I never eat deli meats anymore, so I've never tried any of the Boar's Head products, but in the early days of this board, they were highly recommended by various members, so I was just basing my opinion on out-of-date information, apparently.
Thanks for the heads up. I appreciate the updated information. It's a shame that we've lost another source of safe products.
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.
Mast cell issues?
Tex, I forgot to tell you I have had a cough over the last 4 weeks now along with other rhinitis symptoms and then my stomach started hurting again over this past weekend like I said. I had about 8 spoonfuls of lime jello today at lunch and within about 2 minutes I had pretty significant dyspepsia and abdominal bloating.
I have been reading more about the mast cell issues as of late and am wondering if this is something I need to investigate more into. What seem to be the presenting complaints for most people. I was taking Allegra for awhile and then stopped it over a month ago. Any thoughts? I have never seen an allergist or even know if this would benefit me at all.
I have been reading more about the mast cell issues as of late and am wondering if this is something I need to investigate more into. What seem to be the presenting complaints for most people. I was taking Allegra for awhile and then stopped it over a month ago. Any thoughts? I have never seen an allergist or even know if this would benefit me at all.
I haven't purchased BH low-sodium turkey for quite a while because it's so expen$ive and I no longer can put the slices on bread for a sandwich. I just ate some of their bacon this week and had their ham at Thanksgiving. I believe all their meats are clearly labeled gluten-free. It's always a good idea to read the ingredient list, however.
From what I recall, Boar's Head has the least additives compared to Dietz & Watson and Applegate Farms. Applegate Farms puts carrageenan in all of its deli meats.
Gloria
From what I recall, Boar's Head has the least additives compared to Dietz & Watson and Applegate Farms. Applegate Farms puts carrageenan in all of its deli meats.
Gloria
You never know what you can do until you have to do it.
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Hi Gloria,
I hope you're doing well.
I read the Boar's Head flyer and was appalled at how many extras were in their meats now. I used to love their boiled ham before they changed the formula. I did buy it this time and it still tastes better than most other hams. The added ingredients could cause issues for some people, that's for sure. I won't pay those prices now that they added all the stuff I probably can't pronounce.
Tex, funny you should mention upper back pain. I get that now and then; it's excruciating. I always wondered if I was having a heart or gall bladder attack. I never would have thought it would be from an allergic reaction. Thanks for the info; I always read and appreciate your posts.
All this talk of mast cell reactions is making me want to do some research now.
I hope you're doing well.
I read the Boar's Head flyer and was appalled at how many extras were in their meats now. I used to love their boiled ham before they changed the formula. I did buy it this time and it still tastes better than most other hams. The added ingredients could cause issues for some people, that's for sure. I won't pay those prices now that they added all the stuff I probably can't pronounce.
Tex, funny you should mention upper back pain. I get that now and then; it's excruciating. I always wondered if I was having a heart or gall bladder attack. I never would have thought it would be from an allergic reaction. Thanks for the info; I always read and appreciate your posts.
All this talk of mast cell reactions is making me want to do some research now.
Well, a cough usually isn't part of GI system-mast cell symptoms, though I suppose it could be, in some cases, and rhinitis certainly can be. There's a good chance that you might have picked up some sort of virus going around. Jello itself, (being mostly collagen), shouldn't set off a mast cell reaction. I suppose that the flavoring could, but lime is not a significant source of histamine.jpembry wrote:Tex, I forgot to tell you I have had a cough over the last 4 weeks now along with other rhinitis symptoms and then my stomach started hurting again over this past weekend like I said. I had about 8 spoonfuls of lime jello today at lunch and within about 2 minutes I had pretty significant dyspepsia and abdominal bloating.
I have been reading more about the mast cell issues as of late and am wondering if this is something I need to investigate more into. What seem to be the presenting complaints for most people. I was taking Allegra for awhile and then stopped it over a month ago. Any thoughts? I have never seen an allergist or even know if this would benefit me at all.
However, if you stopped the antihistamine just before the rhinitis symptoms began, that suggests a connection, or quite a coincidence. Typical mast cell reaction symptoms include itching skin, runny nose, throat congestion, possible lip or tongue swelling, and in some cases, even more serious anaphylactic symptoms - plus MC-type GI symptoms, of course.
Most allergists are not trained to treat mast cell issues that originate in the gut. You would have to locate one experienced with, or at least trained to deal with, systemic mastocytosis, and there aren't very many in the country. The few what are, were usually trained by Dr. Maria Castells, at Brigham and Women's hospital, in Boston, I believe.
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.