Mayo Clinic Connect
I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
Liked by Teresa, Volunteer Mentor, jng123, jjdenaro, kellye5 ... see all
@kellye5 I am sure I speak as a group. We are so happy you are there today as well. May you be in the best hands… May the Drs. have the wisdom. You are in our thoughts today and always. Thank you for sharing that you are at your appointments today. I hope it is not too cold…
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Hi friends. We have now been here almost a full week. It has been exhausting and busy but thorough and everyone is so kind. We are to fly out Sunday but have not followed up or gone over any tests with Dr M . Additionally, he wants J to have another colonoscopy and endoscopy which we have been on the cancellation list for days…our app. is a week from today. We would like to get home as this is not cheap but also we are here so would like to just get it done. Any thoughts…I have to change flights and extend hotel tomorrow if we stay. Feels strange going home with no plan.
Liked by John, Volunteer Mentor, Mindi
It all sounds a very full on and intense week for you, especially your son. The preparation for colonoscopy is not easy and I find that in itself very draining. I would think if second colonoscopy can be done soon after the first one would mean less preparation required as colon will still be relatively clean.
It will be shame if you cannot extend stay to complete tests Dr M suggesting and then to have follow up appointment with him and get results and the treatment plan.
If you go home this weekend will you return for appointment you said is a week from today?
In that case I guess your son will not get to have second endo/colonoscopy ? Have they given you any indication when they can get your son on Dr M’s list if you were to stay?
Liked by John, Volunteer Mentor
If we stay I feel certain we can see him or Dr. C who we love as well( one of Dr. Ms fellows) on Monday. I am not flight savvy but think I can get our tickets open ended in case we can get the tests done Wednesday or he tells us a plan and we don't need the additional tests right away we can leave Tuesday..
@kellye5 thank you for the updates. You might want to check with the Rochester Mayo Clinic Concierge Services. They may be able to answer some ticket information for traveling. Here's a link to their page with contact information:
Hoping you will be able to find answers and a treatment plan for your son soon.
Liked by Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator
Thanks so much. There are so many as they are looking for something in addition to CG.MRI with contrast. endoscopy camera pill, gastric emptying, another colonoscopy and endoscopy, reg blood and urine tests, nephro logy, a few more. Thanks for your advice.
we will not return in a week..we will come back inJune
well here I am again. About 4 months into my daughter diagnosis and still nothing to help. Any one know of any doctors with some knowledge of Collagenous gastritis in the west coast??? My daughters gi seems to know nothing and keeps prescribing meds that make things worse where she loses her appetite completely or is constantly throwing up. Only thing we have found to help ease a little bit of the pain and stop the nausea is the cbd oils. We are headed to san Francisco in hopes that the head of gi there has more knowledge then our gi here in Nevada. Kinda like a second opinion. We finally got her iron anemia under control (at least for now) until her stomach bleeds it all out again (we give it about a month) but I hate seeing my child so miserable.
@wendy2001, I am a 20 year old who was diagnosed about 1 1/2 years ago. I have tried many steroids and other medications but have not improved. I am being treated at Mayo Clinic. I have not found any foods which aggravate my symptoms; they occur without warning even with simple foods. I have tried gluten free but found no improvement. I am not familiar with the GAPS diet. I wish you luck with it and am interested to hear how he does with it. I find it amazing that people can be diagnosed with the same condition yet have such different symptoms. I feel sick a lot of the time as well; stomach upset, pressure along digestive tract and heartburn. I also have periods of extreme exhaustion and loss of energy. Have you found anything that helps the weakness and lack of energy?
We were told that the lack of energy and exhaustion has nothing to do with cg. Have you had your iron checked recently? Cause that can cause the lack of energy and exhaustion, and something not obvious to see without blood draws.
I am so sorry you both are going through this. My son and I just spent 12 days at Mayo, MN. I researched and called many research clinics and universities around the country. Dr. Joseph Murray is, in my opinion, worth the travel and Mayo MN is the best for digestive diseases. While CG was again confirmed and out of the box treatment will be tried( my son is sick everyday and on zofran for nausea in addition to others…new protocol to come), Dr. Murray and his fellow Dr. Cartee did not rest until they tested and biopsied and now we wait as they believe some of his symptoms are NOT CG related. Dr. Murray has the knowledge and experience to dig and critically think things through. our 8day trip turned into 12 but worth it.
I hope this helps. I would fly across the country for Dr. M.
Liked by Jamie Olson, Kanaaz Pereira, Connect Moderator
whenever you are sick, vomiting, nauseas, aches…that causes fatique. They will look for autoimmune. Anemia is an early sign of CG. But almost everyone presents differently. my son has chest pains, back, leg, arm numbness, fatigue, diarrhea then constipation, indigestion, throws up…and severe anxiety. This is his new life and we will keep trying new protocol as needed.
OMG – I feel for you. I wish I could talk to you on the phone. Maybe the administrator will let us exchange info if you are interested. I researched and found one of the only doctors in the US that has done research on this. He is head of Pediatric GI at Mass General and teaches at Harvard. He had a few ideas on steroid meds but most meds make my son sick. He definitely believes in nutrition but didn't say how. They are not 100% sure if collag gastritis is auto-immune or not. I took him off most gluten, dairy, egg and soy for two years and the inflammation in his body got better so he grew but energy and weight were still a problem plus he has hashi-moto thyroid. After going to sooo many types of doctors, naturopaths, etc – we are doing the GAPS diet. It is really hard but we are seeing results. He was malnutritioned his entire life and now he is coming back. For the first time ever – today – he jogged outside for 12 minutes.
My son had single digit ferritin levels and little energy. My belief is that with collagenous gastritis, you cannot absorb nutrients so it wreaks havoc on the entire body.
My daughter has had symptoms for 5 years now but was officially diagnosed in november with cg. She has tried 5-6 different medications, gluten free, and nothing helps her. She has nausea, throwing up, body aches, iron deficiency anemia, iron infusions, light headessness, anxiety, depression, and recently started brushing easily and has bruises all up her legs, hip, and lower back. All her other tests came back negative or normal for all other autoimmune and other known diseases. But no gi doctors in our area are familiar with cg and just kinda throw their hands up in defeat. So idk what else to do. Getting to the mayo clinic is almost impossible being low income and having 6 children. So I just research, read experiences from others, and pray for some help or treatment one day.
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I'm so glad to hear that the GAPS diet is helping your son; could you share some details about the diet? Does it eliminate many types of foods?
Liked by John, Volunteer Mentor, Jamie Olson
My son was recently diagnosed with the same disorder, he is 13 yo. Are your symptoms still the same?
Liked by jjdenaro
GAPS is just a tightened version of SCD which the mayo clinic mentions. You eat only monsacharide foods which break down easily. No grains or simple sugar – honey only. Lots of rules and buying clean food- pastured butter and grass fed meat is expensive.
Liked by Kanaaz Pereira, Connect Moderator
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