You're never going to believe this

[constantd]

So... I got to talk with my GI doc today about the results of my colonoscopy and upper endoscopy. And you are never going to guess. Apparently every single biopsy they took of my entire GI tract was normal. YES NORMAL!! This would be a reason to celebrate EXCEPT for the fact that I have still been feeling somewhat crappy. I am baffled. My doc is somewhat baffled. It's all crazy. Here's my theory: I had only been off of the budesonide for 2 weeks prior to the colonoscopy. Obviously the budesonide works and also makes me feel better. But it also makes everything appear normal histologically as well!! I also think that my elimination of dairy, soy, and certain other grains has probably helped histologically as well. So I kind of feel like the whole procedure was a huge pain in the arse and was really done only for the curiosity of my GI doc. Basically I was his science experiment and as a result I had to suffer

Since my last upper endoscopy was done 6 years ago and showed lymphocytes in my duodenum he wanted to see if he could reproduce this and then he would have good reason (at least in his warped head) to put me on Azathioprine. Well well well.... looks like the budesonide helped clear up the upper GI inflammation as well! But get this: the crazy guy still wants to put me on Imuran. I have decided to obviously drop this guy and I am on the lookout for another GI doc. I was up front with him and told him that in all honesty I don't want to hurt his feelings but that I was going to seek a second opinion. Luckily he was very cool about it all. Probably because he is happy to be able to get rid of me! His main concern is just that I've gotten so skinny. I have my theories though. I think that first off, I'm a tiny person to begin with. I was 110 pounds when I conceived my daughter, and I am down to 105 now. I think part of this is from the stress of new motherhood, part of it is from breastfeeding (which I've cut way back on now), and part of it is from further limiting my diet lately and cutting things out (dairy, soy, corn, alcohol, nightshades, nuts, gluten, etc., etc.) while probably not realizing that I wasn't consuming enough calories. And then of course the last part is the diarrhea and malabsorption that was contributing to weight loss. I feel like I have sort of stabilized around 105 for now and haven't dropped below that for awhile.

My plan is to continue with diet and stay on 6 mg of budesonide for awhile while looking around for a new GI doc. Obviously there has got to be someone else out there that doesn't want to put me on Imuran right? Since restarting the last round of entocort (only been a week) I have felt much better HOWEVER I did feel like yesterday after eating a large amount of gluten free bread and baked goods I had a major setback this AM with 7 not so great watery BMs. So I am wondering if grains really is my problem?? Or sugar? I did feel pretty good while on the SCD for a couple of weeks but I just feel so starved and continue to lose weight when I don't have grains. In Veterinary Medicine every good cattle or dairy farmer knows that the way to "finish" any of your beef is to put them on grain - this is how they gain weight! So how am I supposed to gain weight if I am on a Paleo type diet?? It makes me feel better as far as my digestion and bowels go, but I lose weight without grains! What the heck am I supposed to do? Does anybody have any insight? I reacted to all grains on enterolab, but rice was my least reactive (still 2+). I know I still have some healing to do because of my symptoms, and maybe I just need to be patient. But at the same time I also know that as of NOW my intestines appear cytologically and histologically normal. Ugh, ....it's all so confusing.

Sorry for my rant (and complaining) and thanks for listening!

[Gabes-Apg]

Rant away

fantastic news!!

the gluten free bread and baked goods- it could be either grains and or sugar. the combo of both is more likely to cause issues

weight wise - long story short - we are not cows, we need protein to heal and be healthy..
we need to be relaxed about life, food, eating and not be stressed about the next meal
we need to minimise inflammation and toxins that impact our cells to work properly..

I posted this link the other day about importance of protein and how much per day
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22255

are you getting enough protein?
Also - eating gluten free breads and baked products is not the same as eating rice. do you react to eating rice?
have you tried a bland diet of safe proteins, some rice and 1-2 safe veges every meal or most meals ?

and yes - patience and time is a BIG part of it. it takes weeks and months to heal...
the weight gain will happen when you have the 'healing combo' correct, the right eating plan, the right nutrients in balance (minimal deficiencies), minimal stress...

[tex]

Apparently every single biopsy they took of my entire GI tract was normal. YES NORMAL!!

Did you actually read the pathology report, or are you just going by the summary from your GI doc? I would read the pathology report very closely, because there is a huge undefined gap between meeting the diagnostic criteria and actually having normal histology. Did your doc take at least several biopsy samples from each section of the colon, plus the terminal ileum? If not, he may have missed it, because MC only occurs in randomly scattered patches, it does not present with global coverage.

Obviously the budesonide works and also makes me feel better. But it also makes everything appear normal histologically as well!! I also think that my elimination of dairy, soy, and certain other grains has probably helped histologically as well.

It takes several years for an adult's gut to return to normal histology from the damage done by gluten. Kids heal faster. They usually heal in a year or less, but once we get past adolescence, we heal much slower. Therefore, a short regimen of budesonide would have to have unprecedented efficacy to return your gut histology to normal so quickly. Were you on budesonide for 6 years — or only short-term? Likewise, for healing promoted by diet changes — actual histological recovery typically takes several years. Many members here who have been in long-term remission see normal histology on their 5-year or 10-year colonoscopy.

So I kind of feel like the whole procedure was a huge pain in the arse and was really done only for the curiosity of my GI doc. Basically I was his science experiment and as a result I had to suffer

I suspect that you are right on target with that assessment because many gastroenterologists are trying to learn more about this disease. And what better guinea pigs could a GI doc hope for than patients who are willing to actually pay to be guinea pigs?

HOWEVER I did feel like yesterday after eating a large amount of gluten free bread and baked goods I had a major setback this AM with 7 not so great watery BMs. So I am wondering if grains really is my problem?? Or sugar?

I agree with Gabes that many GF flours are cross-contaminated with either soy or gluten, and the more types of flour in a mix, the higher the odds that the mix will be cross-contaminated. And the catch is that GF flours work best for baking when they are a blend of at least several flours, rather than just 1 or 2. And looking at your EnteroLab results, I would have to agree that grains in general are definitely a problem for you.

I've been in remission for almost 12 years now, and I still have a reaction if I try to eat baked products that contain a blend of GF flours, even though the ingredient list appears to be safe. And if that item contains any significant amount of added sugar, it will get me virtually every time. But I was a sugarholic before my symptoms developed, and sugar is known to promote leaky gut. So I'm pretty sure that this is why sugar is a persistent trigger for me, because of the leaky gut connection (all food sensitivities other than gluten are a result of a leaky gut — but this also applies to gluten because gluten causes leaky gut).

In Veterinary Medicine every good cattle or dairy farmer knows that the way to "finish" any of your beef is to put them on grain - this is how they gain weight! So how am I supposed to gain weight if I am on a Paleo type diet??

I grew up on a family farm and farmed for years, and my dad and brother and I had a small cattle feedlot operation for a few years. We learned to do most of our own vet work over the years. I still live on the same farm, but my point is, I understand livestock health in general. You are quite correct that grain is the fastest, cheapest ration ingredient for fattening cattle (or other livestock) for slaughter. But the point that you are missing is that these livestock have a 100 % early mortality rate — they are destined for slaughter. One thing that a farmer or rancher does not do is feed more than minimal amounts of grain to breeding stock, unless he or she wants to spend most of his or her time pulling calves and treating other health problems brought on by excessive weight.

In line with what Gabes suggested, maintenance rations for breeding stock should emphasize protein and fiber, and de-emphasize grain as a source of fat in the diet. Note that this is the equivalent of a shift toward a paleo diet for cattle, while the feedlot rations are clearly a neolithic diet. The implications of this are far more profound than most people realize.

Here's one last thought. If your colon histology actually is back in the normal range (roughly 5 or less lymphocytes per 100 enterocytes), then your MC symptoms are being perpetuated by an alternative source of inflammation, and to the best of my knowledge, the only other source of inflammation that can do this is mast cell activation disorder (MCAD). I've been researching this alternative trigger for MC for my next book, and I'm convinced that it's a valid mechanism for the perpetuation of MC symptoms. The jury is still out on whether it can actually trigger MC initially, but it's pretty clear that once the genes that predispose to MC are triggered by a classic trigger, then MCAD can trigger a relapse (or perpetuate the inflammation) at any time. But obviously this is my own theory, and is as yet unsubstantiated by medically valid RCTs.

Tex

[constantd]

Tex -

I haven't seen the official path report yet, but I asked the GI Dr. to mail me a copy. I am utterly stumped though if what he is saying is in fact true. You do have a good point with MCAD or possibly having mast cell issues. I know that histamine contributes to my problems overall. I do feel better when I remember to take my daily claritin. And I am one of those weirdos that occasionally gets hives/rashes for no reason and avocados make my mouth and throat itchy. Plus, I have hay fever and have been tested multiple times for environmental allergies and come up positive for almost everything minus molds and cats/dogs (which is great considering my profession). It just doesn't make sense though that someone who has had two previous colonoscopies showing LC would have a normal third colonoscopy!! Not to mention the previous endoscopy showing LC in my duodenum. The GI claimed that he took " lots" of biopsies of every part of my GI tract and I like to think he is telling the truth. The only other option is that they somehow mislabeled and/or accidentally switched my samples?? Who knows. Like I said, I am going to get a second opinion from someone who isn't so gung-ho about Imuran. The only other thing that I can think of is this: I was on PPI's for almost 10 years of my young adult life for GERD. The first colonoscopy and original diagnosis was performed when I had been on both a PPI for 2 years as well as an SNRI for a few months. The second colonoscopy I had been on a PPI for about 8 years by that point. With this third colonoscopy/endoscopy I have been off all meds known to potentially cause MC for over 2 years now (thanks to reading your book a couple years ago), as well as being gluten free for >10 years. Maybe these changes helped?? Who knows. Like I said I am stumped and it sounds like my Dr. is too. But why he still wants to put me on Imuran is beyond me and quite frankly CRAZY especially if my biopsies are indeed normal. AND - he didn't have them stained with a tryptase stain to check for mast cells (even though I requested this). So maybe that's the missing link?? This condition is just so weird. Anyways, thanks for your input and I will let everyone know if I find out anything more from my biopsy report once I actually have it in my hands.

Katie

[tex]

Bingo! I'll bet a GF cookie that the PPI was the missing link that was causing the T cell inflammation. If you've been on a GF diet for 10 years, that would certainly make sense.

Are you aware that your biopsy samples can still be re-stained and reexamined to rule out mastocytic enterocolitis? Your gastroenterologist can place that order, and he should be willing to do that at your request, though I suppose he isn't bound by any law to honor such a request. Quite a few members here have made that request and it was granted.

Strangely though, despite the fact that the researchers who originally described ME claimed that over 70 % of patients with what was described as "chronic intractable diarrhea", had an elevated mast cell count that qualified for a diagnosis of mastocytic enterocolitis, this doesn't seem to apply to MC patients in general. Another group of patients who had previously been diagnosed with inflammatory bowel disease, celiac disease, or microscopic colitis, showed mast cell counts in the same range as the controls in that study. And so far, that has held true for the members here who have requested re-staining and reanalysis of their biopsy samples. IOW we have a fair number of members here who have been diagnosed with ME, but none who requested a re-stain received a diagnosis of ME, and mast cell counts were always listed as "normal". This suggests (to me at least) that mast cell issues associated with the more common forms of MC are due to something other than excessive numbers of mast cells. In view of your unusual situation though, it's certainly possible that you might have elevated intestinal mast cell numbers.

I don't understand the infatuation he seems to have with Imuran, either. Maybe it's the only drug that he's ever had any luck with for treating MC.

Tex

[crervin]

Katie, have you tried protein shakes (I use natural factors, vegan vanilla with hemp milk, rice milk, or almond milk)? I eat either baked potatoes or rice with every lunch or supper. I got down to 105, but now I'm up to about 112. It was scary. My children told me my hands looked like my 90 yr old grandmother's....

[constantd]

Crervin - sorry it took me so long to respond to you! Been busy with the in-laws visiting to come see their grand-daughter! To answer your question: I have been experimenting with different protein shake varieties. Some of them will often give me immediate diarrhea so I have to be careful! I do think that adding protein shakes onto my diet would be helpful...but I just need to find some that won't cause me to head straight to the bathroom. It has definitely been an adjustment getting used to having diarrhea while taking care of a 7 month old! Before kids I could at least lay around on the days I was feeling really crummy. Not anymore!

Tex - my stupid old GI doc sent me a simplified version of the findings from the colonoscopy/endoscopy. I requested the actual pathology report so I had to call and ask for it AGAIN. Ugh. Still in the process of trying to find a new GI doctor. Hopefully I will get the actual path report so I can verify that there was no sign of LC. Interesting side note: my husband and I did the 23 and me and got our results this past week. I'm still trying to weed through everything but it's definitely eye opening! Of course I had all the celiac genes as well as other interesting autoimmune gene mutations. I really found the prometheus site to be the most reliable and helpful if only because they back up all their findings with actual research papers. Some of the drugs I had taken in the past I probably shouldn't have due to different mutations so that was interesting. I remember someone on here (I think it was Gabes) suggesting I try Amytriptyline but come to find out I do not metabolize that drug well so will stay away from it! A lot of the information is making my head spin and I'm not sure how to figure out what supplements to take, etc., because some of the genetic mutations sort of cancel each other out it seems? It makes me wonder if a lot of us with MC have similar SNP's and mutations such as the MTHFR, COMT, RAG1, VDR, etc. Has anyone ever looked into that on this forum? I swear I could spend hours researching this stuff (very interesting to me with my biology and veterinary degrees), but I just don't have the time now that I have a child. Dangit;)

Clinically I am doing slightly better. Some days only 3 loose BMs. Other days up to 6 or 7. Always in the morning (always has been - for the last 15 years). Why the heck is that? The majority of our crummy bowel movements are in the morning? It's like over the span of a couple of hours I purge everything from the day before with multiple loose bowel movements. What's with that?

OK, rant over. Hope everyone has an enjoyable weekend. My in-laws are finally gone so mine will finally be restful. yay!

[Gabes-Apg]

interesting about the Gene results and meds...

yes, quite a few have done testing and various methylation reports. (if you do a search for 23andme you will see previous discussions etc)
I dont have either of the main MTHFR (677 1298) but did have major methylation issues and fair amount of other SNP's (Comt, BHMT, VDR etc) impacted

keep in mind the gene info is 'one part of the jig saw' - it is not the be all end all.
two people with exact same genetic SNP's could have completely different health issues depending on any of the following;
- where they live, (what country, what city, how big a city, was it rural)
- fairly importantly -what they ate, (and in some instance what their parents ate!)
- socia economic status - on poverty line, working class, middle class, upper class
- what emotional / mental / physical stressors they had during their lifetime,
- what childhood illnesses they had and the impact on their immune system
- type of family and social life they had loving supportive family, clinical focused family,
- exposure to biotoxins etc mould, EMF/WiFi, radiation, chemicals, pollution etc (and some toxic metal issues are inhereted from parents)
- stable life, minimal moving or lots of changes
and many many more factors that influence 'epigenics'


part of the reason that you do poop in the morning is the body has a time clock of functions. The liver does quite a bit of work when we are sleeping.
better to have the toxins out of bodies before we embrace the day! I have a much better day if I poop at home before going to work.

hang in there, the in law visit would have meant more stress / adrenalin.
keep working on figuring out your eating plan.

[tex]

Yes, many of us have methylation issues due to MTHFR gene mutations. My results tell me that I'm immune to Creutzfeldt-Jakob disease for example, so I reckon I can munch on cheap mad cow meat anytime I want. I too have drug metabolization issues, including Plavix (which I have been taking for 6 years), caffeine, and a few others I can't remember at the moment.

Clinically I am doing slightly better. Some days only 3 loose BMs. Other days up to 6 or 7. Always in the morning (always has been - for the last 15 years). Why the heck is that? The majority of our crummy bowel movements are in the morning? It's like over the span of a couple of hours I purge everything from the day before with multiple loose bowel movements. What's with that?

If you watch a cow that's been lying around for a while, sleeping or chewing her cud, what's the first order of business upon arising? Defecation of course. It's a natural instinct after resting for an extended period. I suspect that Gabes pretty well pegged the poop priority situation. We all have that "mornings are the worst" syndrome when MC is active. It's a marker of MC.

Tex

[dhouts]

That makes sense. I usually have to allow 2 to 3 hours in the morning in order to get ready for work. It's multiple trips to the bathroom before I'm comfortable with leaving the house. Generally, I clean out in the morning but there are times when I will also flare in the evening.

After my colonoscopy last month, I slowly introduced solids and stopped what little alcohol I was drinking. Additionally, I stopped taking the magnesium when I discovered I was taking the incorrect ones. That has made a huge difference. You might say I've normalized other than the 2-3 flares per week. While I'm not completely cured, I'm doing a lot better.

I think I will get tested by the lab in Texas to find out what foods I'm sensitive to. Which ones do you recommend taking?

I have a friend who's a DO. She ran my raw data from 23 & me and the result were interesting. Here's what she wrote:

For starters, you have 4 genes that have trouble processing gluten. No surprise there!
You have some trouble making your own carnitine, even though it is supposed to not be an
essential amino acid, in your case, it kind of is.
You have A LOT of trouble making SOD + super oxide dismutase, which you can think of as very
important in the body. Read the Practitioner SNP report first, as it has the most information in it.
Many areas of methylation are challenged.
You are sensitive to NSAIDS, so should take lower doses and not often.
You need to take more Vitamin D than other people to get your levels up into the 60-100 range

I'm not understanding methylation or what I'm supposed to do about this. I'm 99% gluten free, and I've cut way back on the Advil stuff. I only take it when I hurt all over, it's the only thing that helps. But instead of taking 800 mg, I only take 200 mg, about once a week, and it actually works.

Diana

[Gabes-Apg]

Methylation is unique for each person and very complex - there is no black and white solution.

there are 20 or so individual Gene SNP's related to the methylation cycle. your status in multiple SNP's affects what steps should be taken.
(COMT, BHMT, MTRR, CBS, MAO, DAO, VDR)
Also if you have both SNP's or one SNP for the Gene is also part of the review and consideration etc.

ie - for some people their methylation SNP's indicate they need the active form of B12
for me and my results it indicates that i need two types

there is a 'methylation' section on the forum with some articles.

for now, ensuring good Vit D supplementation, and using the right magnesium is a good start as you tweak your diet.
if you can be 100% gluten free it will make a difference. Especially as your gene testing is telling you that.

[dhouts]

Thank you Gabes, I will do more research on this.

[tex]

I think I will get tested by the lab in Texas to find out what foods I'm sensitive to. Which ones do you recommend taking?

Most members here order the combination of the A1 Panel and the C1 Panel because together they test for the 4 most common and most important food sensitivities for MC patients, plus 11 others that are often a problem. The price is discounted for the combination so it gives the most bang for your buck.

These tests are based on IgA antibodies. Please be aware that 1 in about 300 people who are sensitive to gluten have selective IgA deficiency, meaning that their immune system is not capable of producing normal amounts of Immunoglobulin A. If a person's IgA production ability is too low it's possible to receive false negative results on any IgA-based test. We have a few members whose levels were only slightly below normal who were able to get reliable EnteroLab test results anyway, but if someone's level is way too low, the positive test results are accurate, but the negative results simply cannot be relied on. You may have already had the blood test to check for selective IgA deficiency, but if you have not been checked, your PCP can order the test to make sure that you don't pay for a test that will not work.

Here's a link to the EnteroLab tests that I'm referring to:

https://www.enterolab.com/StaticPages/T ... #PanelA1C1

Tex

[constantd]

Received my biopsy "results " in the mail today. First off, they aren't really the true pathology report but rather the summary from the pathologist. So I don't really even trust them. Secondly, there is an abnormality that my Dr. didn't even mention to me that kind of tics me off. He probably didn't mention it because he doesn't know how to explain it and/or find the answer. Sigh. Here is what it says:

Duodenum, biopsies:
Intestinal type mucosa without significant histopathologic abnormality. Negative for celiac disease. Negative for malignancy

Stomach, biopsy: (does this mean he only took one biopsy?)
Gastric type mucosa with MINIMAL NONSPECIFIC CHRONIC GASTRITIS
H pylori not identified
negative for malignancy

Terminal ileum, biopsy:
Intestinal type mucosa without significant histopathological abnormality

RIght colon, biopsies:
Colonic mucosa with no significant pathologic abnormality
no evidence of acute, chronic, or microscopic colitis

Left colon, biopsies:
Colonic mucosa without significant histopathologic abnormality
Negative for microscopic colitis.
Negative for malignancy

So there ya go. Unfortunately I think this is probably the truncated version since there is no description of the actual chronic gastritis in histopathological terms. For instance, what cells were seen that indicated gastritis? Lymphocytes? Eosinophils? Collagen? WHAT WAS IT?!!! When I asked for the report I assumed I would be getting everything. Ugh. It's like pulling teeth to get any info from these people.

My biopsies from 2011 also indicated chronic gastritis as well as LC in colon and lymphocytes in duodenum. So the gastritis has been present for some time. My Dr. didn't even bring this up. Like I said, probably because he didn't want to have to explain something that he couldn't.

Anybody have any insight about the chronic gastritis?? Can my previous chronic use of PPI's do this?

[tex]

Yes, that's some sort of summary because the original typically describes the size,quantity, gross appearance, and orientation of the biopsy samples, in addition to more detail about the specific findings.

I agree that your doctor probably didn't mention it because he is supposed to be an "expert", but he may have never heard of nonspecific chronic gastritis (NSG). In your case NSG is probably the same type of inflammation found in the colon with LC — lymphocytic infiltration. It's called lymphocytic gastritis (LG), but the pathologist probably didn't want to call it that because he didn't want you to think that you might have LC (or maybe he's never heard of LG either, but I doubt that). Your doc is not likely to be familiar with LG. The pathologist ruled out H. pylori, and you're not taking NSAIDs, so what else could cause the inflammation? IMO it has to be associated with either celiac disease or LC. Note the phrases that I have highlighted in red in the copy of the abstract below:

Abstract

Lymphocytic gastritis (LG) is an uncommon chronic gastritis characterized by lymphocytosis of foveolar and surface epithelium. Lymphocytic gastritis is associated with celiac disease, Helicobacter pylori (HP) gastritis, and varioliform gastritis, but its topology and severity with respect to the associated entities have not been studied in detail. Therefore, we studied 103 patients with LG classified according to the associated entities, including the distribution and severity of LG in the 70 patients from whom biopsy specimens of both antrum and body were available. In 84 patients (82%), a distinct associated entity was identified, including 39 with celiac disease, 30 with HP infection, 4 with varioliform gastritis, 2 each with inflammatory polyp, Crohn's disease, human immunodeficiency virus infection, lymphoma, and esophageal carcinoma, and 1 with lymphocytic gastroenterocolitis. Lymphocytic gastritis was found in 33% of patients with celiac disease and 4.1% of histopathologically defined HP gastritis. The severity of intraepithelial lymphocytosis was greater in antrum than in body in 83% (20 of 24) of LG associated with celiac disease, but in only 19% (4 of 21) of LG associated with HP infection (p < 0.00002). All four patients with varioliform gastritis had more severe involvement of body. Lymphocytic colitis was common (38%, 5 of 13) in celiac disease with LG. Our results indicate that lymphocytic gastritis most commonly occurs in celiac disease and HP infection, but rarely with other entities. The topology of LG can direct the clinical evaluation for associated disease.

Lymphocytic gastritis: association with etiology and topology.

I have a hunch that you are correct that wherever the report says "biopsy" only a single sample was taken. And the "real" pathology report should have specified the area of the stomach from which the biopsy sample was taken (probably the antrum, but who knows?). Your doc apparently only took a single biopsy sample from the terminal ileum also. I wish the number of biopsy samples taken in the various sections of the colon was specified because I still think he may have missed the inflamed areas of the colon (and the ileum). Why would the stomach be inflamed and no inflammation found elsewhere? And by "minimal" does he mean 20 lymphocytes per high-power field under the microscope? That's the minimum threshold for a diagnosis of LC (in the colon).

I don't think that PPI use would cause chronic gastritis. PPIs can cause all sorts of bad things, but that's not considered to be one of them.

Sorry that I couldn't be more helpful.

Tex