How do you tell the difference?

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Robin
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How do you tell the difference?

Post by Robin »

Hi All,
I have not been feeling well the last couple of days! UGH! I have had a lot of pain, left side from my rib cage to my hip. The wonderful brain fog, nausea, body ache and lots of bloating! I am also very tired. I have had NO D or C, just normal. I have been on gluten free, dairy free, soy free and sugar free diet for about 2 month. I take asacol, probiotics and a lot of vitamins. In the beginning it was all trail and era. I thought I was doing good and now not so sure.

So is it time to call my GI or my GP? Any advice would be GREATLY appreciated.

Robin
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tex
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Post by tex »

Hmmmmmmm. Without D or C, that pain is a bit suspicious. You look too young to have diverticulitis, and I don't see how you could be having normal BMs if you had diverticulitis. Your description of the location of the center of the pain could fit diverticulitis, but it's a bit off for pancreatitis. Do you think that it could possibly be due to pancreatitis? The reason I ask is because the mesalamine-based drugs have a history of causing pancreatitis in some patients, unfortunately. I get the impression that most doctors consider that to be so rare that they never expect to see it in their practice. I would think, though, that if you had pancreatitis, you would probably have D, because of the inability to digest fat. That's just a guess, though.

Besides the wrong location of the pain, if you had gallbladder disease, you should have D, (again, because of the inability to digest fat). :shrug:

Tex
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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.
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Post by Polly »

Hi Robin,

It sounds to me as if you may be getting glutened from somewhere. Have you checked all of those vitamins and the probiotic for "starch" or other hidden gluten (or dairy/soy) in the inert ingredients? It may require calls to the manufacturers. Some of us, myself included, do not do well with probiotics.

If you wish, you could list a sample day's (or two) menu, and we could take a look to see if there are any suspect foods. There are some wonderful food detectives here.


Hope you feel better soon.

Hugs,

Polly
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Post by Robin »

Hi Polly and Tex,

Thank you both for your advice/thoughts. After I wrote this post last night the BIG D returned and the nausea turned to vomiting....I really do hate this!!!

Polly....I think you maybe right. I just recently increased taking probiotics to 2 a day. I have never been able to tolerate yogurt of any kind. When I started taking the probiotics I still had bloating and gas but nothing like i use to have and nothing like I have now. I never thought that it would have been the proboitic (its suppose to be good for your gut)! I am on the SCD/Paleo minus all dairy. I have been making ALL my own food, such as cookies, muffins, breads, mayo and more. I have not eaten out in over 2 months (I feel sorry for my husband we use to have "date night" and that ment going out for dinner together). What symptoms did you have when taking the probiotics?


Tex.....Thank you so much for those very kind words. I am not that young! I have had diverticulitis 7 years ago. That felt like glass going through my intestine. This feels more like a constant pain, not dull, but not sharp either (I know I make any sence...its the brain fog). They thought I was having problems with my pancrease back in January but nothing showed up.

I have an appt to see my GI on Friday. I stopped the probiotics and started back at square one with eating. Today it only takes about 20 minutes from the time I eat till I have to go to the bathroom. I can not afford to loose anymore weight. I am only 4'11" and lost close to forty pounds since January.

Thank you both again! I really dont know where I would be with out this support group!! Even if I dont post I am always reading here. There is just sooooo much information.

Lots of health and happiness
Robin
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Post by sarkin »

If your system is that inflamed, you're not getting the benefit of the probiotics anyway - so taking a week off won't set you back (and *will* let you know whether they are a likely suspect). I'm glad you made that call to stop them.

I feel the same about supplements - if you are that sick, they're not helping, and might be hurting. I love supplements - but when I was where you are, I stopped every single thing I was taking. It turned out that I needed to replace several of my 'staple' go-to vitamins...

Eggs can be a problem - for some of us, it's temporary. If you are relying on them (and I sure was, but can't now - hoping to get 'em back!)... and i agree with Polly - post a detailed menu, that contains a trigger, and just the act of writing it out may help you see something new. But if not, the food detectives here will be glad to give it a try.

Wishing you all health and wellness,

Sara
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Post by Robin »

Here is what I eat, everyday for the past 2 months! I hope you guys can find something because this is out of control again! I had to take the day off from work!

BREAKFAST....

Shake with frozen banana and almond milk (this is most days) or egg with a slice of bread or a muffin or pancakes. All bake goods are made with almond flour, baking soda, eggs and flavorings (legal SCD's)


LUNCH.....

Mostly chicken soup (SCD), I like the way it makes my belly feel! Somedays its turkey with grated apple on top in a roll I make (SCD)or left overs from the night before.


SNACKS....

These are ALL made by me. Beet chips, fruit leather, beef jerky, kale chips, chestnuts and sometimes cooked baby carrots.


DINNER....


Chicken, turkey, lots of fish, chopmeat(beef or turkey), soups (SCD/Paleo) and pork (I think I had it once in the 2 months). Side are....green beans, beets, squash, zucchini, carrots, and broccoli.


Beverages.....

Coffee with almond milk and honey, Black mango tea (my favorite) and water...lots of it!

Medication/vitamins....

Asacol 1600mg, diovan hct (for HBP), celexa, B12 1000mcg, vitamin D 1000IU, calcuim 1000mg, magnesium 500mg, maca 500mg, hormone balance which has in it...dandelion root, dioscorea (yam root), black cohosh, ashwagandha, motherwart, red clover, dong quai, licorice root (I take the maca and hormone balance because believe it or not I am still not in menopause). Oh and a multi with minerals and herbs (Trader Joes brand). All my vitamins and minerals all say they contain no wheat, gluten, corn protein, yeast, soy, animal or dairy products, artificial colors, sweeteners, or preservatives. I was taking probiotic (PB8) but have stopped for the last 3 days.

Well there you have it...you all no more about me than my husband.

I am seeing my Gastro tomorrow because I still feel like I have the flu. It has gotten worse since I first wrote this so I do hope with all the great detectives out there someone can come up with something.


THANK YOU GUYS!!!! I know I keep saying this but I really don't know what I would do without this website, everyone here is compassionate and caring.

Robin

PS I can not take Pepto it makes me gag and Imodium gives me cramps and doesn't help at all for the D.
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Post by sarkin »

Robin,

I don't honestly know, of course. I'm going to give you some question-y answers, and you can decide for yourself which might be useful (or maybe neither)..

??Could you be reacting to almond, or to eggs? I was - but what you're describing is more like my reaction to gluten or dairy - the others seem like 'secondary' reactions (there may be no such thing, but that is how I think of them).

??Can you reduce your supplements, even for just a week? Everything seemed to make me sick, back when I was sick. I have changed the formula for some things I take - but it really did help just to drop everything for a brief time - even some things that I've added back in without trouble.

??Celexa... I cannot advise you not to take that, and I think cutting it cold turkey might be counter-productive, but it is in a family of drugs (SSRIs) that are associated with MC. So it could be a factor in your ongoing symptoms, despite meticulous attention to diet.

??Do you hate me yet? Because here's the other thing I tried - no muffins, breads, etc. at all, SCD-legal or otherwise. That's a more extreme step than just questioning almonds... but it sounds as though taking a break from almonds will actually amount to the same thing.

What do you think?
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Post by Robin »

SARA WOW, WOW, WOW!!!

You are amazing and NO ! do not hate you at all!!!

I didn't know that about Celexa. I have been on it for approximately 6 years and I had often asked my GP to ween me off. She would tell me no because she felt it was helping with all the pre menopause problems I was having and until I went into menopause she felt that I should stay on it! I will bring that up to my Gastro tomorrow!

The rest of my supplements I haven't taken again for 2 days and will restart them (if at all)when and if my Gastro says its ok. I just feel like I don't get enough from what I eat. I am bring everything with me tomorrow, at his request.

As for breads,muffins and eggs I could stop them for awhile (or as long as I need to)! But with giving all that up, what does one eat?


AGAIN WOW!! CSI SARA!!!!
Thank you so much!!
Robin
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Post by sarkin »

You'll get more from eat once the healing accelerates. There are several brands that various members here have relied on with success... the most important things to get back soonest are probably a B-complex, plus extra B-12 and folic acid, and Vitamin D3. I now take a D3 that's drops - no capsule (I seemed to react to the gel-cap)

I eat meat, occasional fish, vegetables, and fruit. I went through a phase where I relied a little too heavily on potato chips, but am gently weaning myself off that habit :grin: I lost a bunch of weight at first, gained a little back, and seem stable where I am - not underweight (nor overweight). So it can be done, or at least my metabolism thinks it's a reasonable plan for now. (Oh, and - we eat delicious, fabulous meals - there's no sad plates at our house!)

One thing - it took me a stupid amount of time to realize that if I was going to take grains/etc. off the plate - something else would have to go there. For me, that something is a larger portion of meat/fish.

When you re-add your supplements - no matter what your doc says! - you're best off adding them one by one, and waiting a few days between. That's how I figured out that my B-complex didn't agree with me - I wouldn't have known which was the problem otherwise.

And of course - almonds might be just fine for you. I think any food that we eat in heavy rotation, when we're reacting, has to be questioned... but that doesn't mean I'm right about what will work for you (as I'm sure you already know!).

Good luck - if you use the search function on this site, you will find lists of SSRIs that are known to be associated with MC, in case that's helpful (or in case you gastro isn't aware of this).

You are so very welcome - I hope you hear from others, too.
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Post by Robin »

Hi Sara,

Sorry I am being such a pain in the butt. I just cant believe after 2 months I am having this bad of a reaction to something that I have no clue as to what it is.

I cant eat potato chips :sad: I cant eat any type of chips (i wish)! I have a hard time with steak, pork chops or anything that is a thick cut of meat, roast beef, pork tenderloin (sliced very thin) seems to be ok but I don't know because I don't eat it that often. I can not tolerate raw fruits or vegetables. Everything has to be cooked very well.

I have been so careful not to eat anything that would bother me. I have an Italian household and Sundays is a big meal where the family is all together. I serve antipasto, salad, pasta, meat, all the sides, fresh fruit and coffee and pastries! I sit there and cant and wont eat anything because I am afraid of what those food items will do to me. That as probably been the hardest for me!

My girlfriends husband has Crohns and she said I should try rice and boiled or baked potatoes. Can you tolerate those items? When I started the SC diet they said to take all starches out of your diet and I have. But some of the people on here say they can tolerate it. I think I will just go back to eating my chicken soup for breakfast, lunch and dinner.LOL

Thanks again!
The best of health,
Robin
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Post by tex »

Robin,

I don't see anything wrong with Sara's analysis, so I can't add much.

Worldwide, (and particularly on this board), very, very few people are intolerant of rice and/or potatoes. Those show up as problems only in the most difficult cases.

Can you handle fish? Fish are a safe option for most of us.

Regarding the SSRIs, not everyone is sensitive to them, but many people with MC are, and that applies to virtually any brand. The SNRIs haven't yet accumulated as many adverse reaction case files, (since they haven't been available as long), but the evidence so far suggests that they may turn out to be just as prone to triggering MC as the SSRIs. :shrug:

Tex
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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.
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Post by Robin »

Hi Tex,

Thank you so much for your input on this. I am seeing my Gastro tomorrow and already have a long list of questions!!

I also just ordered the test from Enterolab, so I cant wait to see what that says.

Best of health,
Robin

PS I will try potato and rice when I am feeling better. I don't want to introduce anything new now! I want this flu to go away....very far away!!!
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Post by sarkin »

Robin,

Homemade chicken soup was my breakfast-lunch-dinner - but gosh, you have already been working so hard to clear out the culprits.

It occurs to me... is it possible you have a cutting board, or colander, or - some kitchen thing - that gets cross-contaminated, when you're family feasts (that you can't eat!) are created???

I feel as though you're about to get to the bottom of this, but honestly have no idea which of the suggestions will be the magic bullet - hope it's soon!
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Post by Polly »

Hi Robin,

Well, I see you have not received many comments from the food police. That’s because your diet is EXCELLENT - very low immunogenicity. I can see absolutely no hidden source of gluten, dairy, or soy. The only question I might have are the green beans. They are legumes, which can open those gates in the gut, causing leaky gut, and allowing problem proteins to enter.

I saw your update from your recent GI appt. and am impressed. I would agree with stopping the SSRI and probiotic. The symptoms I get from probiotics are loud gurgling/rumbling and bloating - and D. I would also suggest a trial off of all herbs, at least until you get your MC under control. Herbs are not regulated by any agency (so you never know exactly what you are getting), plus we have such sensitive guts, and the herbs provide yet more opportunity for reactions.

If you will be taking Entocort, I agree that asacol will probably not add anything. You might consider upping your vitamin D3 dose, unless your 25(OH)D blood test showed a very high level, say over 80. I think the body uses about 4000-5000 IUs per day from what I can find in the literature.

I agree that the enterolab stool tests are a good idea. Most of us here can put our MC into remission by eliminating the foods found to be a problem on those tests. Did you order the gene test at the same time? A few of us (myself included) are prone to multiple sensitivities (beyond the enterolab tests), and a certain gene pattern (double DQ) may be indicative of multiple sensitivities. Hopefully that won’t be you!

For 10 years I was able to achieve a reasonable remission by eliminating those foods found to be positive on Dr. Fine’s tests. I say “reasonable” because there were days when I would still have a mushy BM or a little bloating. Ten mos. ago I did an additional test - MRT, which showed sensitivities that I had never expected. In fact, I reacted even to some supposedly “safe” foods that you are currently eating - carrots, yellow squash, pork, almonds, etc. I also found that I cannot eat white potatoes. My point is: Dr. Fine’s tests are the best way to start. If you still have problems after that, there is another test (MRT) that can help fine-tune your diet.

I will be following your progress with great interest. You are well on your way on the path to health. Good luck!

Hugs,

Polly
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Post by Robin »

Hi Polly,

Thank you for reply. I did see my Gastro on Friday (posted under "Thanks Tex and Sara"). He did put me on entocort 3 x a day, asacol 2400mg per day and something called Align (probiotic). Have you heard of it? My gut is a mess and my doctor feels that I need to put back some good bacteria. He did said if I still have problems after a week to stop them.

I did order my test and I did get the gene test too! I cant wait to do and find out what I am sensitive to. It seems lately I am sensitive to EVERYTHING! I have 3 weeks before I go away, I need to be in good shape. I don't want to put my husband through another bad vacation. Right now I am only eating chicken soup and apple sauce! So hopefully I will be okay in 3 weeks.

Hugs,
Robin
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