Newly Diagnosed

[Shelly McFarland]

Hi Everyone, I am newly diagnosed by colonoscopy biopsy as having LC. I have been told for the past 20 years that I have IBS and to increase my fiber to control diarrhea by way of bulking. I am a Registered Nurse and through my own research, asking many members of the medical community, tried GF diet (3 years) and various other remedies (pre-biotics, pro-biotics, etc). None have controlled my diarrhea. I feel guilty saying it, after reading many of your stories, that my diarrhea is only about 3-4 times per day (watery). I have been able to deal with it and it really only becomes bothersome or embarrassing when I travel with those besides my family or have to use a public multi stall bathroom. Additionally, I have had Hashimotos Thyroiditis since my early 20's. I have also been diagnosed with GERD and recently had a shatzki's ring dilated as I was having some difficulty swallowing. I self medicated with prilosec for years, but could go off of it when I was eating GF. I have to say, one of the most irritating symptoms I have had (started 20 years ago) is intense ear itching. I have constant itching and dryness in my ear canals and dig at them constantly. I was wondering if anyone else had this symptom? I have long suspected a histamine/mast cell type issue because of the ears, and additionally I often sneeze and have rhinorrhea for 5-10 minutes after eating anything! I am also fair skinned and sometimes will get a temporary itchy rash after a meal on my wrist and neck areas. I read your book, Wayne Persky, in 3 hours It was very informative, and I commend you on your scientific grasp of the subject. I am starting the elimination diet, taking an H2 blocker (famotadine) and seem to have moderate control with 1 Imodium tab per day. I am especially interested in the Vit D/Magnesium theory for autoimmune issues and will start a supplement ASAP. I appreciate all of your stories and advice! I feel badly that many of you have been treated poorly by your medical community, as a member for 30 years, I like to think that I always listen to my patients and believe they are the experts on their disease; I will be even more vigilant now .

I have two questions:
I will also try an H1 but was wondering what people thought worked the best? Claritan? Allegra? Zyrtec?
Is there a preference or benefit of Pepto Bismal over Imodium for controlling diarrhea?

Thanks in advance!

[tex]

Hi Shelly,

Welcome to our Internet family. I'm another who has always had itchy ear canals. If the ear police had any idea how many Q-Tips I use every year I would probably be locked away in solitary confinement most of the time where I couldn't get to them.

I can only guess of course, but the probable reason why the GF diet failed to work for you is either because you were taking a PPI at the same time, or other (additional) food sensitivities remaining in your diet prevented remission.

Difficulties swallowing and acid reflux/GERD can be symptoms of magnesium deficiency because smooth muscle tissue cannot function properly without adequate magnesium and magnesium deficiency is very, very common with digestive system issues such as IBDs. In addition, PPIs deplete magnesium, as do many other medications.

You are probably reading your symptoms correctly to conclude that they may be associated with mast cell issues. Mast cell activation disorder (MCAD) seems to be very common with the members here, and I personally find it to be a persistent problem if I don't take steps to preempt it or at least limit the effects.

Regarding antihistamines, I use Allegra. I tried Claritin first and didn't seem to feel much effect from it. But I also have to limit high-histamine foods and foods that promote the release of histamine or I will catch myself seemingly trying to scratch my hide off.

Imodium only retards motility. Basically it postpones the inevitable. Pepto-Bismol actually has some small degree of antibiotic effect and it can be used effectively for therapeutic treatment of MC (in combination with the GF diet). The downside (and the reason why Dr. Fine no longer recommends it as a first line of treatment for MC) is that it can cause neurological effects such as tinnitis in some patients.

RESULTS:

Twelve patients completed the trial. Eleven patients had a resolution of diarrhea and a reduction in fecal weight. The average time to respond was 2 weeks. In 9 patients, colitis resolved. When present before treatment, subepithelial collagen thickening disappeared. Those completing the trial experienced no side effects. Posttreatment follow-up for 7-28 months shows that 9 patients remain well having undergone no further treatment, 2 are well but required retreatment, and 1 has continued diarrhea.

CONCLUSIONS:

Bismuth subsalicylate treatment for 8 weeks is safe and well tolerated. This regimen appears to be efficacious for the treatment of microscopic colitis and is worthy of further study in a controlled trial.

Efficacy of open-label bismuth subsalicylate for the treatment of microscopic colitis.

Thank you for the kind words about the book. I wish I could write as fast as you can read — it took me almost 3 years to write that book. Incidentally, you are the nurse that we all wish we had on our side whenever we visit our doctor's office.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Marcia K]

Hi, Shelly. My GI prescribed Pepto Bismol tablets for me, 6/day for 8 weeks. After a few weeks I decreased to 4/day because I became C. It was enough to stop the D and with dietary changes (as listed in Tex's book) I am symptom free unless I get glutened or eat something that causes me to react. I did not have any adverse effects from the Pepto. You've found a great group who will be a great help to you on your journey to healing.

[Gabes-Apg]

Shelly
nothing to add to what Tex and Marcia have said..

Just wanted to say 'Welcome'
with the not so intense symptoms you should respond to well to the anti-histamines, Vit D3 and Magnesium etc.

Happy healing

[Shelly McFarland]

Thanks everyone for the welcome and advice. I have switched to PB (6 per day) and have already seen a little progress Eating GF again and taking supplements! I appreciate all of the stories and advice on this forum. I cannot even imagine what it was like 10 + years ago with no one to turn to. Thank you!!

[Beccasue]

Hi everyone,

I'm just reading up on many posts, and I'm day 5 of the elimination diet. Now originally I just went GF years ago when I got diagnosed with Celiac and LC. Obviously this didn't stop symptoms so now I'm eliminating all the 4 main allergens, my question is- can I just go gf and take pepto and be cured? I never knew this. But is it uncommon? Also does anyone react to the baked goods in those awesome paleo type shops? Are they trustable like once a month? I will still keep doing the elimination diet for now, as it is helping but was just curious. Also were we born with this? Sometimes I feel like my extended family thinks 'she was fine as a child and why Is she all of the sudden sick'. It's hard for me to explain it to them, plus since I lost a lot of weight since I presented (125 to 108) I feel like they think I'm trying to diet for wrong reasons. I hate that feeling. Any advice?

[Gabes-Apg]

can I just go gf and take pepto and be cured?
mmmm slight chance - yes there are some that see a resolution of symptoms by going GF and doing the Pepto protocol
based on my time here on the forum, and the info that people share, you have a 5-10% chance

keep in mind that MC can not be 'Cured' per say. it can go into remission, but flares can reoccur
and not everyone has success with the pepto protocol.

Also does anyone react to the baked goods in those awesome paleo type shops?
what people can tolerate varies from person to person...

Also were we born with this?
there is no black and white answer for this.
yes there is a genetic component linked to IBD's in saying that, just because you have the genes doesnt mean you will definately get it, depending on various other contributing factors, that can be one, some or all of the below;

-Diet and lifestyle, nutritional health (any ongoing long term deficiencies) environmental stressors
-medications - there are some medications that can be 'triggers' for MC and some that contribute/exacerbate MC
-bacteria/parasite major illness
-other health issues - inflammation related or hormone related
-methylation issues / toxin overload
-ongoing physical and/or emotional and/or mental stress (links deficiencies and methylation causes)

I feel like they think I'm trying to diet for wrong reasons. I hate that feeling. Any advice?
making changes to your "eating plan" is not a fad, you are making healthier choices for what your body needs.
some options are sharing some of the articles about GLuten etc that we have in the guidelines to recovery section to explain that inflammation is harmful to the body, (articles are at the bottom of this link http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328) some people have had partners/family read Tex's book about MC.

long story short, this is your body, your life. if we 'own it' both the Dx, and the changes we make - others are less likely to question us.
and I work on the theory that if family/friends wont support the changes we are making to optimise our wellness, they dont have your best interests in their hearts!

one explanation i used for people, - for people with MC, our trigger ingredients are like a poison, that inflames the body and damages the body. we avoid those poisons.

[Beccasue]

Thank you Gabes! I know this takes time and I'm still having WD even on the elimination diet, so I'll keep sticking to it for now. It might be tmi, but I did grow up in a stressful environment and that's where my anxiety came from, so it makes sense that something triggered it. Also I just lost my Dad who was my soul mate and best friend. I do believe relaxing and positive attitude and changes will help. Thank you for your help!

[tex]

Beccasue,

I'm sorry that you lost your dad. That's probably the main reason why you are currently having such a tough time overcoming the symptoms. We are all vulnerable to stress. Gabes did a good job of answering your questions. I'll add this little bit of information that you can use to explain your situation to your extended family.

Microscopic colitis, like all inflammatory bowel diseases (IBDs) and all other autoimmune (AI) diseases, is caused by inflammation. Stress is a very common cause of inflammation, but there also many other causes. Anti-inflammatory medications can suppress the inflammation, but they cannot prevent the inflammation from being regenerated. Only diet changes can do that. Therefore unless certain dietary changes are made, symptoms will probably relapse a few weeks after any treatment using corticosteroids or any other anti-inflammatory medication prescribed by a doctor is ended.

There's no known cure for any IBD or any other AI disease In order to get stable long-term relief one has to prevent the inflammation from being regenerated. We have found that the only practical way to stop the inflammation that causes the disease is to stop eating the foods (or stop taking the medications) that cause the inflammation. Many medications are known to trigger the disease. You might ask why these foods are causing inflammation, and that's certainly a fair question.

Research shows that when the genes that predispose to CC/LC/MC are triggered, the genes that predispose to gluten sensitivity are also triggered. Gluten sensitivity causes increased intestinal permeability and this allows partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because these peptides are obviously not supposed to be there). The immune system then begins to react to certain proteins in those foods every time they are eaten. This is why some of the foods that you have been eating for most of your life can suddenly begin to cause chronic inflammation by provoking your immune system to produce antibodies against them. And because physicians are trained to treat disease by prescribing drugs, and none of them receive any significant amount of formal training in dietary treatment methods, they are pretty much forced to treat MC by prescribing drugs. Fortunately, here and there a few gastroenterologists are beginning to learn about the diet connection, but in most areas of the country, progress is still very slow.

I hope that this is helpful.

Tex

[Beccasue]

Thank you Tex, this is great information. So my body- having Celiac, is forming antibodies to gluten that attack the small intestine AND the leaky gut issue is forming antibodies to the other ingredients right? This is why it is best to eliminate all 4 main allergens? Sorry for all the questions, your guys' knowledge is amazing to me, no dr ever explained this and I wish they had!

[TXBrenda]

Welcome and hang in there. I was diagnosed in 2003 and my WD symptoms pale in comparison to others here. It took me a few years to come to grips with following the GF diet for that reason. Following the GF diet has helped me with symptoms I didn't realize at the time were due to MC.

Condolences on the lost of your dad.

[Beccasue]

Thank you for the condolences Brenda and Tex. :)

[tex]

Beccasue,

It doesn't have to be celiac disease. Only a relatively small percentage of us have been officially diagnosed with celiac disease. But virtually all of the rest of us have non-celiac gluten sensitivity.

The obsolete blood tests used by all mainstream MDs will not detect the type of non-celiac gluten sensitivity that causes our reactions. The antibodies are produced in the intestines (not in the blood), so that rarely do enough of them leak into the bloodstream to produce a positive blood test result. Furthermore, the tests they use are so insensitive that they are pretty much worthless even for diagnosing celiac disease unless the disease has been damaging the small intestine for so many years that the villi are almost totally destroyed (a Marsh 3 level of damage). But many celiacs never reach a Marsh 3 level of damage — so they are never diagnosed (at least not officially, because they do not meet the official celiac diagnostic criteria). Because of such poor sensitivity, many authorities claim that only about 1 in 20 celiacs are ever diagnosed, despite having severe clinical symptoms (doctors can be rather dense when they want to be, because liability risks sort of force them to "go by the book"). Here's a medical research reference if you don't believe me:

From page 108 of the book Microscopic Colitis:

One such study looked at 115 subjects with biopsy-proven celiac disease and found that only 77 % of those who had total villus atrophy showed a positive serum anti-endomysial antibody test result.6 Furthermore, in this particular study, only 71 % of the total number of subjects had total villus atrophy, and for those who had partial villus atrophy, only 33 % showed a positive anti-endomysial antibody test result. As the research report so eloquently pointed out, “Serologic tests, in clinical practice, lack the sensitivity reported in the literature” (Abrams, et al., 2004, p. 547).

Here is reference 6 from that quote:

6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855

As poor as the sensitivity of those tests are for detecting celiac disease when total or near-total villus atrophy has already developed, anyone who has a lower level of damage is out of luck — the tests absolutely will not yield positive diagnostic results for them, so their doctor is forced to officially declare them to be "not gluten sensitive". And most of us are not even celiacs, so our level of intestinal damage is less than Marsh 3 (we typically show a Marsh 1 level of villus damage). A Marsh 1 level of damage is consistent with the inflammation in the colon that's used as a diagnostic criterion for lymphocytic colitis (LC). Therefore our chances of being diagnosed as gluten sensitive by a mainstream doctor are close to nil (unless they stray from the official diagnostic guidelines), even though virtually all of us are just as sensitive to gluten as the average celiac.

You're very welcome,
Tex

[Beccasue]

Thank you Tex. When they did my antibody blood test it was a 35 and then my LC diagnosis came from the scope and colonoscopy I had which also showed the scalloped villi. I'm curious if it's repaired but I don't want to do those tests again quite yet. I'm hoping my absorption has improved :)

[tex]

When they did my antibody blood test it was a 35

Are you referring to a celiac screening blood test or an Immunoglobulin A test to rule out selective IgA deficiency? If it was a celiac test, what did the lab your doctor used show as their normal range for that test?

Research shows that it typically takes from 2 to 5 years for gluten-associated intestinal damage in adults to heal, but kids can usually heal within a year. IOW as we get older it takes longer to heal, but other health and immune system factors are also involved. At your relatively young age you might be able to heal in 2 to 3 years if everything goes well and the inflammation is well-controlled.

Tex