Update....advice appreciated

terre · Post by **terre** » Sun Jul 24, 2016 6:22 pm

Here is where I'm at and I'm not sure what to do next.

First of year: GF/DF

--Internal Med doc tried me on:

Welchol tablets: Could not take due to side effects

Cholestyramine: Took for 5 weeks, then stopped due to side effects

Budesonide (Entocort): Took for approx. 6 weeks...until I went to see a new GI doc....who wanted me to take Uceris.

--New GI doc referred by my IM doc

Uceris: Have been taking 2 months and one week

The benefits I've seen are slowing of urgency and frequency....still no normal BM's....still D, mush or grit.

Now the new doc wants to try me on Xifaxan along with Uceris. He wants me to take the Uceris at least 3 months.

From reading on this site, it appears that taking the Budesonide has put folks into remission even before they have gotten their diets down pat. I don't know what I'm doing wrong.

The new GI doc tried to get my colonoscopy slides (from 2013) to see for himself if it was CC or LC because the report indicated both (said he couldn't get them). So now he wants to do both an Endoscopy and Colonoscopy to see what he can determine. I told him that I was eating GF and so I felt the results would be negative and that if I was Celiac, wouldn't GF diet be what would be recommended? He said maybe it was IBS or UC and felt that it would be beneficial to find out. He said he would want me to go back to eating gluten for a month before doing the test.

After my first appt. with new GI doc, I posted about Endoscopy and eating gluten and I believe it was Tex that said I would need to be eating it for a longer period of time than one month.

I am going to search archives for Xifaxan and see what PP have posted. I am getting really tired of trying everything and getting no results (guess discouraged would be the word). I may have to do EnteroLab testing again.

Thanks,
Terre

Gabes-Apg · Post by **Gabes-Apg** » Sun Jul 24, 2016 10:15 pm

Terre

Have you had your Vit D3 levels checked? are you taking Vit D3 and magnesium?

you mention being GF/DF
what is your current eating plan?
(apologies if you have shared this elsewhere recently )

do you have any other known health issues / are you taking any other types of medication?

Post by **tex** » Mon Jul 25, 2016 9:18 am

Terre wrote:The new GI doc tried to get my colonoscopy slides (from 2013) to see for himself if it was CC or LC because the report indicated both (said he couldn't get them). So now he wants to do both an Endoscopy and Colonoscopy to see what he can determine. I told him that I was eating GF and so I felt the results would be negative and that if I was Celiac, wouldn't GF diet be what would be recommended? He said maybe it was IBS or UC and felt that it would be beneficial to find out. He said he would want me to go back to eating gluten for a month before doing the test.

I hate to second-guess your new GI doc because at least he keeps trying, and the only way to find a solution is to keep trying until we find one that works. That said, he obviously doesn't know much about MC because whether the diagnosis is CC, LC, or MC is moot point — they are one and the same because they can segue back and forth between the 3 forms. LC patients do not have the diagnostic markers of CC, but all CC patients do have markers diagnostic of LC. And the treatment is the same, regardless of the type, so who cares what someone chooses to call it?

Yes, a positive celiac test result would indicate a need for a GF diet. Because there are many benefits (and no harmful effects) from following a GF diet for virtually anyone and everyone, regardless of whether or not they are a celiac, what's the point of even considering a celiac challenge and test after someone is already following a GF diet? IMO requiring a gluten-sensitive patient to eat gluten for a month or more in order to satisfy a doctor's curiosity about a celiac diagnosis is cruel and inhumane treatment. And in almost every case, as you pointed out, after all that punishment, the test will almost surely show a negative result anyway. So why do it? Doctors need to get their act together and adopt a celiac diagnostic test that does not require punishing the patient. An excellent way to do that for example would be to use EnteroLab's tests.

The EnteroLab tests are reliable, and they can detect gluten-sensitivity for up to 2 years after gluten has been removed from the diet. But most mainstream doctors are too hardheaded and prejudiced to use those tests because of professional snobbery against doctors who choose to use the Internet to offer lab tests direct to the public. Those doctors need to get over their petty snobbery and learn to use EnteroLab's tests, and stop punishing patients because of the medical profession's own self-inflicted limitations.

You certainly don't have UC, because if you did, that diagnosis from the original pathology report would be on your record. And IBS doesn't even exist, so that's irrelevant.

Many members here have tried Xifaxan (rifaximin). In fact some have tried multiple treatments. But so far, I'm not aware of anyone who has reported any benefits of the treatment beyond a couple of weeks at the most. The problem with that type of treatment thinking is that MC is not typically caused by dysbosis (though it can be in certain cases). The dysbosis is caused by the MC (not the other way around). Because of that, any treatment targeting gut bacteria can only provide temporary benefits at best. After a couple of weeks passes, the gut bacteria population will again re-stabilize in essentially the same pattern that existed before the treatment. Gut bacteria populations are determined by diet and digestion problems, and the only way to change gut bacteria populations over the long term is to change the diet and/or improve digestion (by resolving the inflammation that causes MC).

So as I initially pointed out in this post, it's good to see a doctor who is trying to track down the problem, but the approach that he has proposed has virtually no chance of success. He will probably learn something about the disease (at your expense), but unfortunately you are unlikely to benefit from his efforts.

I don't understand why your new GI doc has been unable to access your existing biopsy slides. It's SOP for past doctors to transfer records to currently doctors, but in some cases the patient is responsible for arranging that transfer. Some members here have hand-delivered prior records to new doctors in order to facilitate the transfer.

I wish I could think of something that you are overlooking. Gabes is right, incidentally, that vitamin D and magnesium deficiencies can prevent healing.

Tex

brandy · Post by **brandy** » Mon Jul 25, 2016 10:40 am

Hi Terre,

If you try Xifaxin try it at home on a weekend (when you are not planning on going out.) I tried one pill and has a severe reaction to it. They advertise it heavily for IBS-D. I took 1 pill at a Japanese restaurant with my friend. (I had rice.) On drive home I had extremely severe cramping and was able to hold back the WD until i got home to a bathroom.

Looking at your start date it appears that you have been suffering for awhile. It may take time to get results if you have suffered for years. It appears you are having some improvement on Uceris --i.e. lack of urgency. We have some folks that are on budesonide or Uceris for a long time before tapering off....think 6 months to a year. I'm not sure why doc took you off of budesonide at 6 weeks. That is too short of a time to discontinue.

It sounds like you were positively diagnosed with MC. Are you having bloody D? That is usually a symptom of UC. IBS is not diagnosed by colonoscopies/endoscopies.

Colonoscopies/endoscopies are not without risks....think Joan Rivers.

Suggest call former GI doc/pathologist yourself to initiate location of your last slides and find out how you can access these slides.

My GI doc number 2 sent my original slides out to another pathologist to be retested. I think I had to sign off on some paperwork but I can't remember the details.

brandy · Post by **brandy** » Mon Jul 25, 2016 10:42 am

LDN (I have not tried it.)

terre · Post by **terre** » Mon Jul 25, 2016 11:16 am

Thanks for responding Gabes and Tex....I don't know what I would do without y'all.

I have had my Vit D checked and the first time it was low....but second time it was within limit. I am taking Vit D-3, Doctor's Best Mag, Vit B-12 (Methylcobalamin) with B6 and sometimes I take a time released B-Complex with Folic Acid (also contains Vit C). Also take Calcium.

As far as diet, I make bone broth and add meat, veggie and add jasmine rice or GF noodles or potatoes.

I make the muffin recipe listed here....so for breakfast I have 2 mini muffins, GF sausage patty, banana and almond milk. I also change it up and have a sausage patty and rice chex with almond milk and banana.

Lunch and dinner are either bone broth (as above) or a protein seasoned only with salt and a veggie or sweet potato or regular potato with a little earth balance to moisten.

Snacks are: Enjoy Life GF Sugar cookies, Lays lightly salted potato chips or Skinny Pop plain popcorn. Sometimes I cook a peeled apple.

We eat out occasionally (used to eat out almost every meal) and I have found three restaurants that I feel are okay.....always eat the same thing from menu.

I drink water, almond milk and sneak in a Sprite at times.

I think that's pretty much it.....trying not to forget anything.

My meds are Neurontin and Clonazepam (at bedtime for Fibro) and my hormone tablet (which I plan to discontinue in 2-3 months).

I talked to new GI doc about my meds and he said he could give me Ambien (to replace Neurontin and Clonazepam).....there is no way I will do this as it took me years to figure out the Neurontin/Clonazepam ratio to help my symptoms and allow me to rest at night. I am willing to discontinue the hormones at this point. He also suggested trying probiotics.

I have eye drops for Glaucoma, but other than that, I'm pretty much afraid to take anything.

I so appreciate your taking the time to give me input. It just seems that I should be seeing some benefit by now. Maybe I should try the re-mag.....thoughts?

Thanks,
Terre

PS: What kind of packaged tuna do others eat? White Albacore or the regular? In oil or water? Is there any concern for mercury? Also, do you add anything to it?

jessica329 · Post by **jessica329** » Mon Jul 25, 2016 11:25 am

Almond milk gives me horrendous diarrhea. Something to consider.

terre · Post by **terre** » Mon Jul 25, 2016 12:38 pm

Oooooh Jessica, sorry to hear that you have that reaction to almond milk! I seem to be able to tolerate drinking it.

Brandy, thanks for the tip on Xifaxan....if I try it, it will definitely be on a weekend and at home! I do not have bloody D (thank goodness). I truly think the new GI is trying to help me, but some of the things we discuss, I already know the answer to due to this site....but I can't bring myself to tell him.

The new GI doc wanted to change me to Uceris (which is time released Entocort) because he felt like it would do a better job of treating the whole colon. Both types had the same effect on me. As we all know, less urgency is a good thing. If I'm going to be on the road, I take an Immodium along with Uceris and feel pretty confident that I won't have to make any rush stops (depending on length of trip).

I'm glad that you mentioned the slides, as I forgot to reply to Tex's post regarding those. I told the new GI that I would be happy to pick the slides up and hand deliver, but he said they probably wouldn't give them to me. He said they are particular about the packaging and handling and that he would request, but as I said, he told me he was unable to get them. I may do some checking on my own and see what I can find out. Thanks for reminding me!

Thanks for your help,
Terre

Gabes-Apg · Post by **Gabes-Apg** » Mon Jul 25, 2016 1:37 pm

if you are still having fibro symptoms, then magnesium deficiency is still at play.
I would suggest considering the ReMag product that is better absorbed.

Vit D wise, within limit is ok for people that dont have IBD's. we should aim to have a higher level.

eating wise, I dont think there is one thing that is causing issues, but maybe it is a combo of things
The plain popcorn could be a bit high in fibre, the sprite coupled with with your fruit intake might be a bit too much sugar, along with with eating out, (small amount of contamination etc) these with the magnesium deficiency, hormone etc maybe the combo that is inhibiting healing.

life with MC is a tough gig, lots of changes - eating wise, lifestyle wise, and how much energy we have to put into our routines to get through each day...
for most getting control on symptoms is not too bad, for some it takes alot.

hope this helps

Erica P-G · Post by **Erica P-G** » Mon Jul 25, 2016 2:31 pm

Gonna high light some things in here...

New postPosted: Mon Jul 25, 2016 9:16 am Post subject: Reply with quote
Thanks for responding Gabes and Tex....I don't know what I would do without y'all.

I have had my Vit D checked and the first time it was low....but second time it was within limit. I am taking Vit D-3, Doctor's Best Mag, Vit B-12 (Methylcobalamin) with B6 and sometimes I take a time released B-Complex with Folic Acid (also contains Vit C). Also take Calcium.

As far as diet, I make bone broth and add meat, veggie and add jasmine rice or GF noodles or potatoes.

I make the muffin recipe listed here....so for breakfast I have 2 mini muffins, GF sausage patty, banana and almond milk. I also change it up and have a sausage patty and rice chex with almond milk and banana.

Lunch and dinner are either bone broth (as above) or a protein seasoned only with salt and a veggie or sweet potato or regular potato with a little earth balance to moisten.

Snacks are: Enjoy Life GF Sugar cookies, Lays lightly salted potato chips or Skinny Pop plain popcorn. Sometimes I cook a peeled apple.

We eat out occasionally (used to eat out almost every meal) and I have found three restaurants that I feel are okay.....always eat the same thing from menu.

I drink water, almond milk and sneak in a Sprite at times.

I think that's pretty much it.....trying not to forget anything.

My meds are Neurontin and Clonazepam (at bedtime for Fibro) and my hormone tablet (which I plan to discontinue in 2-3 months).

I talked to new GI doc about my meds and he said he could give me Ambien (to replace Neurontin and Clonazepam).....there is no way I will do this as it took me years to figure out the Neurontin/Clonazepam ratio to help my symptoms and allow me to rest at night. I am willing to discontinue the hormones at this point. He also suggested trying probiotics.

I have eye drops for Glaucoma, but other than that, I'm pretty much afraid to take anything.

I so appreciate your taking the time to give me input. It just seems that I should be seeing some benefit by now. Maybe I should try the re-mag.....thoughts?

Thanks,
Terre

PS: What kind of packaged tuna do others eat? White Albacore or the regular? In oil or water? Is there any concern for mercury? Also, do you add anything to it?

With in limit = what is your ending result number?

Earth Balance = is it Soy free too?

Enjoy cookies = I've had my run ins with that brand and the cookies get to me every time if there is an ingredient of Konjac that has diuretic properties.

Apple= some are just plain sensitive to the fructose.

Hormone tablet = I had to cut this out ASAP, and I saw great results fairly quickly.

I can't do much if any Tuna, but I have tried SkipJack Tuna and the ingrediants are just Tuna and Sea Salt, no water - and it is like $4 a 6oz can....spendy, but for those moments when you are craving seafood it is absolutely the best tasting ever (I also add a bit of Veganeise to the tuna and it mimics what mayo does, very yummy). Here is a link to it https://jet.com/product/detail/79d9cf6f ... lsrc=aw.ds this is just an example because I can get it at Walmart where I live and this is pretty much the price I have seen.

I think I am at a stage now that I have to cut my small meager chocolate out now too....it is always something in the diet life of MC.
Hugs...
Erica

terre · Post by **terre** » Mon Jul 25, 2016 3:26 pm

Thanks Gabes and Erica!

I had D level checked in April and the Value was 59....Ref. Range for "Optimal" 30-100 ng/mL

As far as the popcorn, I just opened my second bag of it....so just recently decided to try it. I will not buy another.

The Earth Balance is Soy Free.

The Enjoy Life do contain Konjac.....I haven't noticed any difference if I eat them or not.....but will stop for now.

I would think the Sprite I have occasionally is worse than the apple.....but need to cut out for now. (Sprite is my weakness since I went Dr. Pepper free.)

I am going to stop the hormone, but it will be a bit....won't go into reasons....TMI.

Thanks for the info on the tuna....appreciated.

Gabes, I'm going to try the ReMag. I'll have to order it.

Thanks to each and every one that has chimed in. Now I just need to figure out how to avoid Endoscopy / Colonoscopy and not hurt doc's feelings.

Terre

PS: Once again, I need to get snack suggestions. I've looked at Lara bars and don't think ingredients are what I need at this time.

crervin · Post by **crervin** » Mon Jul 25, 2016 8:53 pm

if you take xifaxan, make sure you take a probiotic. It caused me an extreme yeast infection. It took 3 months to get rid of.

terre · Post by **terre** » Mon Jul 25, 2016 11:02 pm

Thank you for that bit of info....don't need a yeast infection! You take the probiotic after you finish the Xifaxan.....correct?

Did the Xifaxan help you?

Terre

crervin · Post by **crervin** » Tue Jul 26, 2016 7:06 am

I would take it during and after. Buy a probiotic capsule break it open and sprinkle on cold food throughout the day. For me taken all at once goes through me. It helped for a couple of weeks. I took it before I started my diet change though.

terre · Post by **terre** » Tue Jul 26, 2016 7:12 am

Thank you Martha. Have a good day!

Terre