Had a laparoscopy yesterday.

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amberlink09
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Had a laparoscopy yesterday.

Post by amberlink09 »

Hey guys,

I haven't been on in a while with the holidays and all, but I had a laparoscopy yesterday because my doctor was certain that I had endometriosis and that it was also causing my stomach issues, but of course they opened me up and found nothing, which I suppose is good news but I still have zero answers. I was promised at least 6 months of being pain and symptom free after this, but now I'm just back to every problem I have being blamed on having IBS. I really don't know what to do anymore and I feel like I've tried everything and gone to every doctor. I'm only 21 and I feel like it's time to accept having to deal with constant D or C and pain every day. I'm thinking about having more enterolab testing done or possibly MRT testing done, but it's expensive and I don't know if my parents will pay for it since they are 100% against doctors right now. So I just need some encouragement please!
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Post by tex »

Hi Amber,

Well that's a bummer, but as you say, I suppose it's good news in a way, because it rules out one possibility.

I have a hunch that the problem is that you probably have one of the less-common forms of MC (there are at least 12 different types, and most doctors are only aware of the two most common forms). Of course, the treatment would be the same, but if they (or their pathologists) don't understand how to diagnose the type that you have, then they will never be able to diagnose it.

I would love to know which genes you have that predispose to gluten sensitivity, because that might tell us where to start looking. For example, if you have one or more celiac genes, that would lead in one direction, and if you should have double DQ genes, that would suggest that you have a higher sensitivity level than most of us, and probably many more food sensitivities. The gluten sensitivity gene test is done on a DNA sample taken from a cotton swab rubbed inside your cheek, and it costs $149.

The food sensitivity stool tests would eliminate a lot of questions, but it's possible to accomplish the same thing by trial and error (and dedicated attention to details in your diet). Do you want to try to verify whether there might be something in your diet that might be preventing you from reaching remission? If so, if you will list exactly what you are eating each day, we may be able to figure out where the problem/s might be. Also remember that many drugs and supplements can trigger MC symptoms and/or prevent remission (including contraceptives and HRT).

Everything happens for a reason, and something is causing your problems — the tough part is figuring out what it is, of course. But if we collaborate and give this some serious thought, surely we can find a solution. This board is loaded with highly intelligent, and very empathetic people, who have walked a similar path, while they were seeking their own solutions.

At one time, I thought exactly the same thing that you mentioned — that I would have to spend the rest of my life with those miserable symptoms. After my GI doc told me that there was nothing wrong with me, :roll: I sort of gave up for a while. But then I came to my senses, and decided "to heck with doctors" and I started researching whenever I had a chance, and keeping a food journal, and eventually it paid off, and I found a solution. There's a solution for each and every one of us — we just have to find it.

FWIW, a lot of us have the same attitude that your parents have, about our GI docs.

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 Leah »

So sorry to hear that you still have not found any relief Amber. I was just wondering about you the other day. What is your diet like now?

Leah
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Post by amberlink09 »

Hi Tex,

Thanks for the advice! I do feel like it's something more than IBS, and I remember my colonoscopy/endoscopy report showed "normal" inflammation of my stomach and some parts of my large intestine. I am definitely done with doctors for a while, I just feel like they have no idea what they're doing anymore! I truly believe that everything comes down to diet, and I must be intolerant to something that I'm eating, I just don't know what, it's especially hard since the enterolab testing showed it wasn't any of the top allergens. I've been trying to keep food journals but still haven't found anything.

I've been thinking about trying an elimination diet again but it is going to take A LOT of preparation. I'm going into my last semester of college and working a ton on top of it until at least mid-march, so I'm not confident that I can stick to an extremely strict diet right now. Before the holidays I was back to strict paleo and I was getting about one good day a week out of it, which isn't great but it is something! So once I'm recovered from this surgery I will probably head back in that direction. I am also considering autoimmune protocol for paleo which eliminates eggs, nightshades, and nuts I believe. Currently with the surgery recovery I'm barely eating, but when I do it's mainly gluten free toast and the like.

Also Tex, here are my enterolab test results for the gluten sensitivity gene testing:
HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

I may go ahead and talk to my parents about purchasing the rest of the food intolerance panel from enterolab. My dad suffers from hemorrhoids and was never able to feel better with the doctor's help, so he's all about looking into more natural options for me.
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Post by tex »

Amber wrote:it's especially hard since the enterolab testing showed it wasn't any of the top allergens.
I didn't realize that you had already had those tests. If your results were all low, you might have selective IgA deficiency, which means that you do not produce normal amounts of immunoblobulin A. Anyone who does not produce normal amounts of immunoglobulin A is not able to produce enough antibodies to trigger a positive result on EnteroLab's stool tests, because they are ELISA tests based in IgA antibodies. About i in 300 people in the general population have selective IgA deficiency. We have several members in that situation. Did your doctors do any blood testing to rule out selective IgA deficiency? If not, that should be done before ordering any more tests from EnteroLab.

If we've already discussed this in the past, I apologize for not remembering. With so many discussions going with so many members, I'm not always able to remember all the details. Doctors have a big advantage — they have all the patient's records in front of them on their desk.

Also, the information you listed about your gene test is the discussion of the results, but it doesn't state the actual gene test results. Do you by any chance know what they were? For an example of what they should look like, here are my gene test results, for example:

HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)


The first allele is the most common celiac gene, and the second is a non-celiac gene that predisposes to gluten sensitivity.

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 amberlink09 »

Ah, here are the results you were looking for:

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

And yes I did visit an immunologist back in May and she tested my IgA levels and they were fine, but I was surprised not to find any sensitivity to dairy or soy with the tests. I suppose my IgA levels could have gotten lower by August, but that seems unlikely right? Thanks for all of your help Tex!
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Post by tex »

Hmmmmm. That's a very uncommon combination of genes. Unless I overlooked someone's results, the only other member who has that combination of genes is Zizzle.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10084

If you verified that you do not have selective IgA deficiency, then I would expect that status to remain valid, and it means that the EnteroLab test results are probably correct. There is one possibility that could explain food sensitivities that the tests could miss, but it doesn't happen very often. The ELISA tests that they use are so specific that they will only detect antibodies to one particular protein. Each of the tests checks for antibodies to the one protein that most commonly causes reactions. IOW, for dairy products, they test for antibodies to casein, because those are the most common. However it's possible to be sensitive to one of the several proteins in whey, for example. Most people who are sensitive to one of the other proteins, are also sensitive to casein, but it's possible to be sensitive to one of those proteins but not be sensitive to casein.

For gluten, the tests only check for antibodies to the alpha gliadin peptide, because virtually all celiacs react to that one. However, there are several hundred lesser peptides that can trigger reactions in some people. It's not common for someone to be sensitive to one of those peptides, but not be sensitive to the alpha gliadin peptide, but it's possible.

For eggs they test for the primary protein in the egg white, but it's possible to be sensitive to one of the proteins in the yolk, but not be sensitive to the primary protein in the white. And so fourth and so on.

That's why Dr. Fine points out in the discussion of the results that it's still possible to be sensitive to a food, even with a negative test result. Obviously, it's not practical to test for all possibilities, because that would make the tests prohibitively expensive.

Since you don't have selective IgA deficiency, then it's possible that the C panel of tests might provide some helpful results. Negative results for all the most common food sensitivities, though, is certainly a frustrating (and puzzling) turn of events.

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 amberlink09 »

Thanks for the clarification Tex! This makes me feel like an elimination diet may be the better route for me, but it's just so entailed I'm not sure how to start. Would MRT testing maybe be a good idea too? I know a few members have done it but enterolab seems to be the more common route.
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Post by tex »

The MRT tests hundreds of foods and chemicals, but the results are not as definitive as the EnteroLab results. The MRT sometimes misses major food sensitivities, such as gluten or casein. That's why most of us begin with the EnteroLab tests.

The MRT results are usually helpful for detecting some of the less obvious foods that cause us to react. They are not particularly helpful for determining foods that are safe to eat, though. IOW, the list of "red" (reactive) foods is fairly reliable, but the list of "green" (safe) foods often cannot be relied upon.

You can find a discussion of how to go about an elimination diet here.

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 amberlink09 »

Thanks Tex, I'll stick to enterolab then if I decide to go that route!
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Post by Gabes-Apg »

Amber
as someone who has had digestion issues their whole life, to spend 6 months? doing elminiation and testing of ingredients is a small period of time in the scheme of things.
one you figure out your major triggers, and your safe eating plan, you will be well, full of energy, minimal pain, and able to get your life back.

it sucks that there is no easy way, or short cut for this stuff. I managed to do elmination and work full time in a stressful job (and travel internationally to france for 3 weeks in the middle of it)
you dont have to put your life on hold for this stuff. thats part of the key to sucess, it is how you integrate your MC management plan into every day life through the good days and the stressful days, holiday periods and travel.

rather than outlay for tests, buy good quality ingredients that majority of the MC'ers find safe (like coconut oil as per your other thread)
keep the journal, review it once a week and the answers will appear before you know it.

Thinking about it and wanting to do it wont eliminate the symptoms. you have to give it 100% all of the time, be patient and give your body time to heal.
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Post by Zizzle »

Hello Amber, my long-lost sister!!

Bummer you have my mix of genes, including the celiac gene. Interesting that I am the first person in my entire family to have an autoimmune disease, despite having the gene that predisposes to the most autoimmune problems. My family on both sides is amazingly disease free by today's standards, no cancers, no chonic conditions. My Swedish grandma who smoked all her life had thyroid and gallbladder issues...I suspect she might have developed autoimmunity if she didn't smoke so much. My Guatemalan grandma and mom always said bread and pasta didn't agree with them, and neither did lactose...so who knows where this came from.

As you know, I've been diagnosed with Amyopathic Dermatomyositis, which is basically a horrible autoimmune skin rash. I flared 8 years ago, then again last year. My lymphocytes are attacking the small blood vessels of my skin, and my large intestine (LC). I am lucky to have a very mild case compared to most people with DM, and I have responded well to steroids so far (which many people don't). Prednisone has also cleared up my MC symptoms for now, but I don't recommend it!

I also have Joint Hypermobility Syndrome or Ehlers Danlos Syndrome, Hypermobile Type which is genetic (but they haven't identified the gene. All they know is it's on chromosome 6, same location as the HLA alleles). I was a very flexible girl growing up, popped my hips out on occasion, had bad knees for sports, and eventually had pelvic separation during my pregnancies (the babies FLEW out!). But unlike most people with this condition, I don't live with any significant pain from it, so I ignore it. Can't figure out who in my family has it. Probably my mom.

I am lucky that I have no pain of any kind, not even with the LC. They even found a big, busted ovarian cyst, and I don't feel it.

I wish there was someway we would help you figure out this puzzle. You are too young to be suffering like this.



:bigbighug:
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Post by amberlink09 »

Wow an elimination diet in France is pretty impressive! I tried an elimination diet a few months ago but gave up a week and a half in because I was extremely constipated and feeling awful. I also think I may have cut down my food options a little too much. I need to do some research on what kinds of fruits and veggies work best for the people on here and hopefully take it from there, and I think I'll stick to fish and chicken for my protein options. Since I eat paleo I know I'm capable of planning ahead and doing all the cooking, but I guess at my age all of my social life revolves around food or alcohol for the most part, so I'm trying to figure out how to tackle that aspect of things. I'm in my last semester of college, so I want to enjoy it and not just sit at home because I can't go out. I know that that's silly and I should be more committed to my health, but sometimes being able to go out and get a meal and a few drinks with my friends is more helpful to my mental health.

Hey sizzle! It's very interesting that we share the same weird genes, and that we are the only sick ones in our families! My grandma has always had some stomach issues but never had it tested, and other than that high blood pressure is the only thing that runs in my family so no one understands why I'm so sick. I'm pretty convinced my mom has recently developed celiac though, she started her own business last year and has wound up working like 90+ hours per week, which I think triggered the celiac. She can't eat Italian food anymore without throwing up later, and that was one of my first triggers as well, followed by breakfast food.

It's interesting that you mention DM, I've recently been getting random skin rashes that the doctors can't figure out, but my blood results pointed to an allergic reaction of some sort. They gave me prednisone to calm it down when I do get the rash, and it definitely helps.

I do wish the pain would go away! My surgeon did remove an ovarian cyst during surgery so I'm hoping that that was contributing to at least some of the pain so I'll get a little relief soon.
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Post by Zizzle »

It's interesting that you mention DM, I've recently been getting random skin rashes that the doctors can't figure out, but my blood results pointed to an allergic reaction of some sort. They gave me prednisone to calm it down when I do get the rash, and it definitely helps.
Now I know never to take a rash for granted. I let this smolder for almost a year before getting serious about it, and now I'm stuck on immunosuppressive meds. Ugh. I'm determined to get off these meds though!!

I suppose our 2 genes are a bad combo from our otherwise healthy parents. I think my genes combined with my allergic husband's further doomed my kids. :sad:

My mom developed anxiety and gastritis after menopause, then amoebas, then they discovered a raging h. pylori infection. All the antibiotics for that certainly mean not so good things for her going forward. But she has a healthy diet, lives on a tropical farm, and makes her own yogurt every day, so I think she's better off than me.

When my rash started and for many years since, I had high ANA (speckled pattern), rheumatoid factor and anti-smooth muscle antibody (tied to autoimmune hepatitis). None of the myositis or lupus-specific antibodies, no abnormal CBC or chem panels, and no joint pains, so docs were stumped. I think my nickel allergy and sensitivity to metals and chemicals has some involvement in this. Mast cells on the skin too -- I have dermographia (skin writing) and sweat-induced hives and prickly heat. Are you sensitive to nickel by chance?
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Post by amberlink09 »

Hey Zizzle, I thought I replied to this message but it looks like I never did. I'm certainly jealous that your mom lives on a tropical farm, she must have access to so many great foods!

It's interesting that you mention the high ANA, I've been tested for lupus and come back with a high ANA but it didn't match any of the patterns. I've had extensive allergy testing but come up with nothing. The only thing I can think of with nickel is that I used to be able to wear earrings but can't anymore or my earring holes get infected.
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