In Tears After Endo Visit. Says It's Not Pheo. Now What?

[Kris4444]

That's a great question as I'm trying to get diagnosed for both. Both of them cause GI issues though.

I emailed my GI doc yesterday to ask if they kept any of my biopsies and if they did could they be checked for mast cell. It sounded from his reply that they have and he was asking pathology to check! This might keep me from having to have other invasive testing done.

[jrlehnardt]

Kris-Not getting in til May is not bad at all. Most of the doctors we end up needing to see have much longer wait lists. Yes I hate when my digestion just stops working. It doesnt matter what I do, it decides when it wants to start moving again.

Boymommy3- Tummy problems go along with actually all 3. Eds because the loose connective tissue. So the bowels can get stretche out too much and make it difficult for our digestion to move smoothly (easiest way I know how to explain it), mcas can cause tummy problems if your mast cells are acting up in your gut. Anything you eat that is high histamine or causes a histamine reaction can make for unpleasant tummy problems. Also pots can have tummy problems as the ans is responsible for digestion as well, so if we have dysfunctional ans it can be dysfunctional digestion as well. Gastroparesis is common in pots and eds, and you have an increased risk of getting by having either or both. Hope this helps. I am sure someone else can explain it better as I am having major brain fog, but I thought I would answer now otherwise I would completely forget about it.

[Kris4444]

I know that 3 months isn't really that long, I waited forever to get into Mayo and Hopkins. I was just hoping to get things taken care of while off work but at least we have the ball rolling!

[Lel]

Keep hanging in there Kris!

[Kris4444]

Thanks Lel!

I have an appointment tomorrow with Dr. Tinkle! Hoping to get some answers.

[Lel]

Any more clarity?

[tinkerbella]

I'm so sorry for all you are going through. Try to stay strong, many of us have been right where you are now. Arm yourself up with as much knowledge as you can and proceed forward. Answers will come, they just don't come fast enough for us. ((((Big Hugs))))

[Kris4444]

I did meet with Dr. Tinkle and an immunoligist. I think we are finally getting somewhere. Dr. Tinkle is going to talk to my rheumatologist and immunoligist.

They did check my biopsy for mast cells and did find some. I'm not 100% sure what that means. They did allergy testing on me and I have no allergies which makes all od this more interesting to me.

I'll let you know when I hear back from Dr. Tinkle. Thanks for checking on me!

[issie]

Kris, that's not at all odd. I always say in regards to MCAS ---have no allergies --yet react to everything. You never know what will trigger them. You can be fine with something one time and react the next. There are some things that you can trace down as something that will always trigger a reaction. With that you have to totally avoid those things. It requires a journal and making notes on reactions and figuring out triggers. You are getting closer.

There is a large number of us with this trilogy. EDS - MCAS and POTS and usually it's HyperPOTS.

Issie

[Kris4444]

Issie,

I thought the same about the trilogy. Getting the hyper pots diagnosis and joining this forum is how this new journey began for me.

Strangely, Dr. Tinkle said that with Eds patients it's usually regular POTS not Hyper pots and that mast cell issues haven't been proven to be related either as of yet by science but is talked about a lot through "social media".

I wonder what he has discuss with my doctors and what many diagnosis will be. I just want to feel better.

Kris

[Kris4444]

Issie,

I thought the same about the trilogy. Getting the hyper pots diagnosis and joining this forum is how this new journey began for me.

Strangely, Dr. Tinkle said that with Eds patients it's usually regular POTS not Hyper pots and that mast cell issues haven't been proven to be related either as of yet by science but is talked about a lot through "social media".

I wonder what he has discussed with my doctors and what my diagnosis will be. I just want to feel better.

Kris

[issie]

Im HyperPOTS and have all three. I think most of us that Dr. G put on GastroCrom that have EDS and MCAS --all of us have NE levels above 600 ---I think. (Guys and Gals --am I right about that??????)

The things that have helped us with MCAS you may find help with your EDS too. I have talked about my meds and what has helped me the most ---bunches of times --so won't go into that again. But, if you want to PM me --if you can't find it --Let me know.

Issie

[jrlehnardt]

Yes I believe most that have eds and pots it is just the normal pots, because it is the blood vessels in the legs being too loose that cause the pots for them but the ones that have all three it is usually hyper pots. I just met with dr afrin about mcad and his belief is more leaning that the mast cells possibly causing the connective tissue problems and the ans problems too. But since there isn't any research yet proving it, we just know that the ones that have pots and eds that may have mcad, typically have hyper pots. He said it would be interesting where all this research goes and where all of these medical conditions linked will be in 20+ more years. I have been on gastrocrom for over two months and it helped a little with flushing episodes but made me feel so wiped out and worn out to where I couldn't function. Stopped it just recently as some of the energy is back. But I am waiting for all my labs to come back so hopefully I can get on stuff that helps. I have been having sleep problems a lot an energy problems and headaches. Do any of you have chiari as well? My vitamin d has been really low and I have been on a weekly dose of 50,000 Iu and no change in energy ?

[Kris4444]

That is what I thought too. It will be interesting to see what happens with me. I really do think we are on the right track now. I'm hoping that means that I can get back to exercising and riding my horse without feeling like I'm going to die afterward. One can only hope!

[issie]

It took me months to get my Vit D levels up and it does seem to help some. But, I have to stay on high doses to keep it up to only 50. Some alternative docs think it should be higher then that. I have what would be considered Chairi 0. But, not thinking that is really the issue. I do think that there is some issue ---but not THE issue. I also have a very bad back and neck with lots of degeneration and arthritis ---disk pushing into spinal cord and lots of instablity.

I think that Dr. G at Mayo is testing this out on a few of us. Since I'm HPOTS and have EDS and MCAS --the GastroCrom and H1 and H2's have been a big help for me. I found that I had to start out slow and low with the GastroCrom and I still don't take the RX'd amount --take less. I've found that playing around with the dosages of these --taking less was more for me. I didn't need as much as some take. Since GastroCrom can also work on the autoimmune system --it can help issues in that dept. too. You may find ---like I did, the hard way ---that when you come off the GastroCrom --you will realize how much it was helping. I did the same thing --and felt the same way the first time around. But, went back on at a lower dose and doing good on it.

For those that GastroCrom isn't working for, they are switching to ketotifen. If you're in the States I think some are getting it from Canada.

Interesting thought of the MCAS causing the EDS. I have another theory on this in regard to protozoa (you can read about that on the thread for it) --but, the treatment for MCAS and diet change should help this too. I think there may be some truth to this --as my mom also has MCAS and I'm sure there is some genetic connection between the two. I agree, it will be interesting to see what all is uncovered in the next even 5 years. I think much more will be known.

I'm trialing a new med --just started last night to help immune system issues. Having a bit of a reaction ---probably MCAS ---but, will see how it goes.

Issie

[Kris4444]

I have my second appointment on Friday with the immunologist. She took a bunch of blood. She was sure that my vitamin D levels were going to be very low. I have wavy nails (this is kind of new) and she said that is a good indication of a vitamin D deficeincy. I will be interested to see what else if anything shows up in my blood work. Seems like I either have great, normal blood work or really weird stuff going on. It's always a surprise.

I do have a weird rash (also new) on my neck. I'm not sure what is causing it as they have started me on 5 different new meds in the past week so it's hard to pinpoint which one it might be but I'm thinking maybe the antibiotic for the thrush. Who knows. It's always something.

I've really been struggling this past week or so with joint pain. The immunologist doesn't want me taking Motrin. I tried Tramadol and itched for the whole weekend, won't do that again. So I've been taking the Motrin as needed. It works and I don't think it "triggers" anything in me but who knows, maybe that is one of my problems. I need to get through a work day though and between the headache, joint pain and fatigue it's pretty difficult.

[issie]

If you have a mast cell problem --there are some meds that are okay and others not okay. Something must be triggering a mast cell release causing the itching and rash. Things like aspirin and NSAIDS can trigger a release.

Issie