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
We just returned from Mayo and my 24 yr old who presents with every symptom…was put on the DASH diet. He has such trouble with pain and nausea that the smaller meals may help.
Liked by John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
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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?
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My 13 year old son was just diagnosed with CG and has missed over a month of school. It seems that there s a common thread of fatigue among these children with CG but we keep hearing from doctors that the fatigue is caused by something else which is very confusing for us. As of today we are putting our son on the GAPS which we have learned about on here and see how that goes. One of o7r biggest issues is f8nding a doctor to at least attempt to guide us in a direction and as of yet everyone seems to be pointing the finger at other directions which is becoming frustrating to say the least.
Liked by Kanaaz Pereira, Connect Moderator
Because of the lack of information on this I started a Facebook page it’s called “Collagenous gastritis discussion group “ and hopefully we can start sharing information .
Liked by jjdenaro
Sorry to hear about your son.
What are the symptoms your son has presented with to date?
What alerted you to take your son to Gastroenterologist?
My own symptoms have been Intermittent central chest pain since early childhood, large stomach bleeds causing vomiting, blood in stools (makes stools black), frequent hiccups and anaemia.
My fatigue is due to low haemaglobin and iron stores from stomach bleeds (both chronic and more acute).
Fatigue could also be due to poor appetite and therefore missing out on adequate nourishment. It is hard to eat when experiencing stomach pain and fullness.
I agree it is very frustrating as many Drs have not heard of CG.
@kellye5, @frank1957 @mindi @wendy2001 @mommyof6 @epvb – Thank you so much for sharing your experiences- please continue to do so. I can't express enough gratitude to all of you that go through the trauma of being ill or caring for a loved one and continue to share in this community. For all the current members here seeking comfort and support and to all the future members that are here seeking information- sharing is caring. Thank you. I find you all encouraging and the information and experiences you share here is priceless.
Liked by Kanaaz Pereira, Connect Moderator, Mindi, scarlet3508
My son's issue has always been around fatigue. Although many doctors say it is not because of cg, my view is that it is all connected. The nutrients are not absorbed and leak into the blood stream. Our microbiome is so messed up that normal chemical reactions in the body do not work correctly. Then nutrients/minerals do not get to the parts of the body that need it. You end up with all different kinds of problems. My son had a vitamin d level of 1. No one had ever seen that. His ferritin levels don't budge. And on and on. You have to heal the gut. My belief is that it all starts in the small intestine and gut. People end up with cg or crohn's or other gastro conditions. The Mayo clinic mentions the scd diet for crohn's but you have to have someone to guide you or it is way too hard. This is the direction we are going and are working with a naturopath out of town. We skype and email. Again, this is just my view ( a Mom that can't research enough) . We'll see how it goes!
Liked by John, Volunteer Mentor
Yes thank you all for sharing! Please continue to do so. @wendy2001 I couldn’t agree more that the gut is so integral in healing this. While we discovered my daughter’s CG well before some of the horrible symptoms ( intense pain and bleeding). I know she wasn’t absorbing all her food because of her lack of growth and also fatigue. It is frustrating when Dr’s tell you it’s not related then want to send you on a rabbit trail of other tests. My advice trust your instincts and the test information you have and don’t be afraid to get second opinions. We haven’t had a follow up scope yet ( thinking about contacting Dr. Murray to see if he wants a sample for his research), but good news after 2 months on Wahl’s paleo my daughter is growing! Her energy levels seem better too. Again can’t thank you all enough for being in this group!
Liked by Jamie Olson, Kanaaz Pereira, Connect Moderator, Mindi
@buckeyeliz @wendy2001 Thank you all for always sharing experiences. 2 months after paleo and your daughter is growing. This is fantastic news. Can you confirm is/was your daughter suffering from anemia; low blood counts? has the paleo diet controlled the bleeding? Did you daughter have to be transfused due to bleeding. Does she not have to be transfused now? are her level maintaining?
sorry for the pain she feels ~ its so hard being a mom and dealing with everyday symptoms of our children.
@frank1957 I don't see your facebook page.
It seems like Walhl's Paleo and GAPS are extremely similar in their direction. GAPS might be a little more restrictive in terms of clean but I'm not sure on that. You can only have foods that are monosacharides because they are easier to break down then diosacc. GAPS is an extended version of the SCD diet and totally based on SCD. More people are familiar with SCD. In GAPS or SCD, you go down for a bit while you are starving the microbiome on sugar and yeast causing foods. My son felt sick for about 8 days but I was prepared and he lost a few pounds which he didn't have to give. However, he has already gained some back. He is soooo excited about feeling better and being able to see the light. We have only been on it for 4 weeks. It's very expensive in terms of food – only grass fed beef, etc.
Has anyone tried or had luck with the over the counter FDgard or IBgard capsules?
@jjdenaro did you find it? "Collagenous Gastritis discussion group"
I was diagnosed with Collagenous Gastritis.2 years ago. I was having severe stomach pain and I was anemic. I have had multiple test (scoped twice, MRI. swallowed a camera, blood tests, etc.) I was treated with Prevacid and iron supplements which greatly helped. After a year I switched from Prevacid to Zantac. It worked for a while, but my stomach pains have recently returned. I closely watch what I eat. I have noticed it is worse with processed foods and gluten. I am always searching for ways to keep it under control. My GI doctor recently moved out of state and I am now searching for one in the St. Louis area with experience in this. Thank you!
My teenager was diagnosed 2 years ago. We took out gluten, dairy, soy and egg. That helped a little but not enough. Steroids made his feel worse. Now we are doing SCD/Gaps diet and that seems promising. No processed anything. Seems like the only ones having success are going the nutrition route. There is a new facebook group you might want to join.
I found processed foods and foods with preservatives are serious culprits. Here are a few surprise things I found out about preservatives and processed foods. I share them in case they might help you
1. Suphites are a very hidden preservative -and just a little causes problems for me.
2. There are sulphites in grapes and onions – just naturally. I only eat these items in small small quantities.
3. fish are frequently coated with sulphites ON THE BOAT to preserve them.and no one knows
.4. if vegetables go to a restaurant in a bag – and this happens in many good restaurants as well as chains – there are preservatives/suphites
5. canned and (maybe) frozen veggies have sulphites – The inside of cans are coated with sulphines. Exception (i think) – in-its-own-juice pineapple and tuna
6. pork is always treated with something and makes me sick
7. beef can not, by law. have sulfitees – that means a default can always be a hamburger
8/ Regualr chicken has sulphites int he packaging, ORGANIC chicken does not and i can eat it.
9. hot food creates a problem for some reason
Take away what works. Ignore the rest. Good luck! Val
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