Help with Pillcam Results

[amberlink09]

Hi Everybody,

It has been a long time since I have posted on here! I gave up on trying to start feeling better for a few years, but I'm now back at trying to find the cause. I still don't know if I have microscopic colitis or not but this has been by far one of the most helpful forums I've found and I could really use some guidance.

A little background: I am 23 and I have been diagnosed with Celiac for 5 years now but I've seen barely any improvement since going gluten free. I am suffering from extreme bloating/distention, diarrhea 5-15 times/day, abdominal pain, and malabsorption- my ferritin was recently at 0 before getting infusions and my b12 and vitamin d are low as well (I have to keep up the b-12 with shots). My C-Reactive protein is also slightly high- around 6. I have some non-stomach related issues like headaches joint pain, and fatigue. After my ferritin was found to be 0, my doctor decided to try a pillcam procedure on me since previous endoscopies/colonoscopies didn't show anything, and he thought there might be Chron's somewhere in the small bowel.

After the pillcam study, he called and told me everything looked great and that I just have IBS, and offered to put me on Linzess. I again gave up for a few months, but decided to request the test results today.

The results say "there are several phlebectasia, punctate ectasias, aptha, and areas of chronic mild inflammation. None of these rise to the level of clinical significance. There is no suggestion of small bowel Chron's or Celiac disease."

Does this seem normal? Does anyone know what the level of clinical significance may actually be?

Thank you in advance for the help!
Amber

[Grahm]

Hi Amber,
This is way out of my league . I'm pretty new at this, just diagnosed June 2014. I'm so much better and on the way to a normal life ( if there is such a thing). I've eliminated gluten and dairy. I'm sure you will have plenty of help chiming in.

Always hopeful,
Connie

[UkuleleLady]

Hi Amber,
While performing a colonoscopy, did your doctor take biopsies to test for MC? It seems remiss if he did not. MC may be only visible via microscope, but can cause major distress to one's health.

I can't interpret your test results, but I can say that your symptoms sound like MC. MC is l(in my opinion) akin to celiac of the large bowel. There is a gluten connection but many of us have a reaction not only to gluten, but to dairy, soy, eggs, other grains. Sometimes more.

You could look into enterolab testing, or try an elimination diet to see if removing the most likely offenders (dairy, eggs, soy, along with gluten) provides some relief.

We also advocate a low fiber diet while in a flare (active diarrhea). It helps to stop stressing the colon.

Best wishes to you, and I hope you can keep up the energy to find more answers.
Nancy

[tex]

The results say "there are several phlebectasia, punctate ectasias, aptha, and areas of chronic mild inflammation. None of these rise to the level of clinical significance. There is no suggestion of small bowel Chron's or Celiac disease."

Does this seem normal? Does anyone know what the level of clinical significance may actually be?

Hi Amber,

No, those are not normal markers. Those notes describe dilated blood vessels, (possibly a congenital condition), small scattered dilated spots on blood vessels, blisters, etc. I have no idea what the implications might be. Knowing the locations might be helpful.

Incidentally, IBS does not exist. Your doctor just doesn't have the foggiest idea what's wrong with you, but he's not honest enough to admit it.

Tex

[amberlink09]

Thank you for the responses everyone! I have been doing this for about 5 years now and I've gotten pretty good with my test results, but this one was way out of my league!

I had an endoscopy/colonoscopy 2 years ago but the only inflammation found was in my esophagus/stomach/small intestine I believe, so my doctor did the pillcam this time to get a closer look at the small intestine. Unfortunately this means we didn't get any biopsies. Since everything seems isolated to the small bowel this means MC isn't a possibility right?

I really don't know where to go from here, I can't seem to find a decent gastroenterologisy. So far we've ruled out Chrons, SIBO, and parasites, and the only diagnosis I do have, Celiac, is now uncertain as well. I also eat a Paleo diet, and I've done SCD and FODMAPs before with little result. I've done the enterolab testing as well, but I didn't come back positive for allergies to eggs, soy, or casein. Any suggestions on how to proceed? Thank you again for the help!

[tex]

Since everything seems isolated to the small bowel this means MC isn't a possibility right?

Not necessarily. MC can (and usually does, though most GI docs don't realize it) affect the small intestine too. But it would be very unusual for it to affect the small intestine without at least some presence in the colon. However, it is very common for GI docs to miss MC when biopsying the colon, because the inflammation is not global, it's typically present in scattered patches, so it's easy to miss if the doctor doesn't take enough biopsy samples. MC can also affect the stomach and esophagus, but again, most GI docs are not aware of that.

and the only diagnosis I do have, Celiac, is now uncertain as well.

Celiac disease is forever, once you have a diagnosis. The fact that your small intestine does not show any markers of celiac would only mean that you are doing a good job of avoiding gluten in your diet. A pillcam is not capable of detecting anything other than massive damage to the villi of the small intestine, so it is not capable of ruling out celiac disease, anyway. A microscopic examination of biopsy slides is necessary for that determination.

Unless the bloating is due to a supplement, it's almost certainly due to a food sensitivity. I recall some of the discussions we had about your negative test results earlier, but I don't remember if you ever had your blood checked to make sure that you were not IgA deficient. The tests yield false negative results for anyone who has selective IgA deficiency. This also applies to the ELISA-based blood tests used by other labs.

EnteroLab now offers tests for 11 other antigenic foods that cause many of us to react, including corn, oats, rice, beef, chicken, pork, tuna, almond, walnut, cashew, white potato. It's called the C1 Panel. If any of those foods are a part of your diet the test might possibly be helpful.

The low ferritin is most cases (in adults) is due to blood loss. The notes from the pillcam didn't specifically mention any sites that were actively bleeding during the procedure, but those issues are typically associated with GI bleeding. Massive bleeding will cause D (been there, done that), but very limited occasional bleeding will cause no noticeable symptoms in many cases.

Are you by any chance taking an oral iron supplement? Many of them can cause bloating as a side effect.

I wish I knew of a GI specialist to recommend, but unfortunately the nearest one recommended by other members is in Houston.

Tex

[Joefnh]

Amber has your doctor run the simple blood test that specifically looks for Crohn's disease?? Thats how they initially found it with me. Prometheus labs has a test that is quite accurate in detecting Crohn's or Ulcerative Colitis in their early stages. I would print these pages off and bring them with you to your next appt. If it is Crohns its best caught early.

http://www.prometheuslabs.com/Resources ... 1-0113.pdf

http://prometheuslabs.com/Resources/PRM ... _1_6_5.pdf


Prometheus is a well regarded lab and covered by just about all insurers.

[Gabes-Apg]

Amber,
By the symptoms you have listed, you are ingesting food or foods that are major triggers.

I understand that it is frustrating not to have an exact diagnosis. Albeit, the best treatment for all IBD's is the same, remove major triggers, foods, lifestyle etc. follow a low inflammation gut healing eating plan.
You may have to eliminate other common major triggers, dairy, eggs, soy, to overcome the D, joint pain, bloating etc.

Additionally, the B12, iron issues are related to mineral/nutrient deficiencies. The ongoing inflammation in your gut, is affecting cell health.
High doses of Vit D3, Vit C, magnesium and zinc are fantastic for reducing inflammation, gut healing, improving cell health, which will increase nutrient absorption during digestion.
Have you had your Vit D3 tested recently?
If B12 deficient, whether you have oral supplements or injections, your body won't use the B12 treatment properly if there are other deficiencies.

12 months ago I was b12 deficient. In this time I have corrected quite a few other deficiencies, my cell health has improved, digestion is the best it has been in 7 years.
If you want further info, let me know.

Nb, it was not a doctor or a specialist that diagnosed the root cause issue and got me on the track to wellness. I did a lot of the prelim work, found a practitioner, nutritionist, I could afford who helped fine tune scientific root cause, I did 50-75 hrs or more of research, made diet and lifestyle changes, focussed on correcting deficiencies.
The reality for many of us, there is no quick answer, no quick fix.
You are young, if you make the necessary changes now, you can heal and have a healthy happy 60 years!!

[amberlink09]

Thank you everyone!

I do feel like food intolerances may still be the root cause, I just don't know where to start because I've tried so many different diets! Maybe the new enterolab panel or a nutritionist could be a good place to start. What about MRT testing? Does anyone know if nutritionists can be covered by insurance? I have reached my deductible and between that and working with a naturopath and having tests done outside of my insurance I have spent an astronomical amount on healthcare this year, and would like to use insurance wherever possible!

Joe, I haven't had the Prometheus test, but my PA did send me some paperwork on it (she is far far more helpful than my doctor) so it may be a good next step if for nothing else than to rule it out once and for all. I have decided to get a second opinion now on the pillcam results, so we will see what that turns up.

My current doctor seems to believe the lack of damage to the villi in this test and my last endoscopy (which was 3 years after giving up gluten) indicate that I don't have celiac- I know he is ridiculous and doesn't seem to understand that that means I'm healing. But, other GIs have told me that my original diagnosis is very uncertain because I didn't have villi damage, just inflammation and increased intraepithelial lymphocytes in the duodenum, and I haven't improved much on a gluten free diet. But, I think I had early stage celiac that a normal doctor would've misdiagnosed. I also have the Celiac gene and know I react very strongly to even gluten cross contamination.

I'm not on an iron supplement currently, after a few months of supplementation my ferritin dropped from 13 to 0, so I did iron infusions which helped immensely. I am not sure which vitamin D I got tested, but I believe my current level is 18, and my b12 is around 170. It's been over a year since I've had b12 injections and I've watched the levels fall, so this may just be something I'll have to continue permanently.

Thank you again for all the info everyone! It is extremely helpful.

[Gabes-Apg]

Amber
what has the Naturopath said about the situation?

whether it is 'early stage celiac' or serious food intolerance, your symptoms indicate inflammation, ineffective digestion. It wont improve until all major triggers are removed. Rather than trying 'diet types', set up an eating plan that works for you.
Start on a small base of ingredients, get to a stage with minimal symptoms, then start to try other ingredients.
Stay with your safe ingredients until there has been good healing.
The quicker way to identify major triggers is Entorlab, then MRT to fine tune.
in the early days of Dx I could not afford Entorlab, so did elimination process. It took me 6 months to confirm all major and medium level triggers.

It may sound overwhelming, time consuming and in some aspects expensive. You have some sort of IBD, it is 'for life', implementing sustainable diet and lifestyle changes is necessary for your long term wellness. Based on the symptoms you are having, your body is sending the message it cant keep going as it has been. You could try some medications to get some short term relief while you figure out the eating plan that will work for you.

The Vit D3 level is low, deficient. Someone with IBD issues should aim to maintain 40-50.

[Gabes-Apg]

Keep in Mind, no diet type will work effectively if you are still ingesting/having contact with major triggers.

James mentioned in another post that he was using listerine and it had gluten in it, he had good improvement once he stopped using it.

Also, for some major triggers can be things other than foods, medications, environmental factors, especially if Histamine/Mast Cell is part of the inflammation reaction.