Collagenous Gastritis

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.

Hi @wendy2001,

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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?

My son was recently diagnosed with the same disorder, he is 13 yo. Are your symptoms still the same?

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.

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.

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.

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 .

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.