Celiac disease diagnosis years after RNY

[2young4this 0]

I know this post is older but I was reading everyone's stories and desperately need help. I am 38 year old female and 12 years post RNY and removal of gallbladder. I became lactose intolerant immediately after surgery but have had severe abdominal pains for years after drinking wine, alcohol, etc. I thought it was an ulcer but just had upper/lower scope done a few weeks ago; removed a couple polyps from colon but no big deal and no ulcer seen. I have been having bad headaches for years with chronic Constipation, bloating, gas, vomiting and Dr after Dr to find no answers... A couple days ago I became the most ill of all!!! I started having the most severe stomach pain imaginable with extreme bloating, all of my joints hurt, face is swollen, I feel poisoned and feel like something just isn't right in the intestines... Me and my husband decided maybe it was gluten intolerance so we threw out everything that contained gluten and de-contaminated all dishes, etc. I have had low Iron always but with the constipation already being so bad it makes it really hard to want to take iron supplement.... I have been sitting here all day, in tears at times from the pain, and just don't know what to do. Trying to get into Gastro Dr here is a month wait.

Please help....

[2young4this 0]

I know this post is older but I was reading everyone's stories and desperately need help. I am 38 year old female and 12 years post RNY and removal of gallbladder. I became lactose intolerant immediately after surgery but have had severe abdominal pains for years after drinking wine, alcohol, etc. I thought it was an ulcer but just had upper/lower scope done a few weeks ago; removed a couple polyps from colon but no big deal and no ulcer seen. I have been having bad headaches for years with chronic Constipation, bloating, gas, vomiting and Dr after Dr to find no answers... A couple days ago I became the most ill of all!!! I started having the most severe stomach pain imaginable with extreme bloating, all of my joints hurt, face is swollen, I feel poisoned and feel like something just isn't right in the intestines... Me and my husband decided maybe it was gluten intolerance so we threw out everything that contained gluten and de-contaminated all dishes, etc. I have had low Iron always but with the constipation already being so bad it makes it really hard to want to take iron supplement.... I have been sitting here all day, in tears at times from the pain, and just don't know what to do. Trying to get into Gastro Dr here is a month wait.

Please help....

[S_Shoshannah 1]

Dear 2young4this,

I had many posts here about my Crohn's and gluten intolerance after gastric bypass, but they were all somehow lost due to an administrative error. So here is some of my story, and after I will give you some suggestions. I had a gastric bypass 14 years ago. I have been gluten intolerant OR celiac for ten years. I have Crohn's for over six years now.

When I went to the doc to be tested for celiac, I was told it was impossible for me to have that. So I went gluten free anyway. I felt MUCH better. However, I will never be able to get a diagnosis of celiac disease now. In order to get a diagnosis of celiac, one has to be on gluten for at least a year. Or else it will not show up in the blood work or the biopsy when the small intestine is scoped.

Over six years ago, I had Constipation so painful that I ended up in the E.R. After appointments with a gastroenterologist, I had the colonoscopy. I had Crohn's which was confirmed through a biopsy and then blood work.

My gallbladder was removed a year later. I had gallbladder disease every single day of that first year of Crohn's. the gastroenterologist told me that I was suffering from mild Crohn's and was overreacting. After my gallbladder was removed, I started feeling better. After that, things went up and down....

I have been told my case of Crohn's is complicated. I had part if my large colon surgically removed from the Crohn's. I am on meds for the Crohn's, and I am still gluten free. My surgeon told me that they think I have celiac disease, but not to go on gluten ever again because I already have a diagnosis of Crohn's. If it is not celiac disease, then it is non-celiac gluten intolerance. After someone is gluten free, they have to be on gluten again for a year or longer in order for the celiac to show up in the tests.

I am now on the road to wellness because I follow a holistic approach for the Crohn's. I follow the Listen to you gut book series and website for everything including my Iron supplements to Calcium to herbal Crohn's treatments, etc. Yes, it is expensive. However, it is still cheaper than being deathly ill with costly out-of-pocket expenses.

I know exactly what you mean about the anemia. I had a port for almost five years for Iron infusions.

I would suggest for you to NOT make my mistake of going gluten free before being properly tested for celiac disease. In addition, I suggest that you go to the emergency room if you are in tears from the pain. That sounds like a medical emergency.

During your upper and lower scope that was a few weeks ago, did they biopsy for celiac and Crohn's or Colitis?

Edited June 3, 2015 by S_Shoshannah

[S_Shoshannah 1]

2young4this,

Were you tested for C-diff? If someone is positive to C-diff, the treatment is a fecal matter transplant from a healthy donor...such as your husband.

If you have a different parasite, other than C-diff, mainstream medicine does not know much about that.

[GixxerDiva 0]

@@Brandy36 - I just signed up on this forum as I had/have the same question as you. I had a roux-en-y

in 2004, and at that time I am pretty sure they never mentioned anything about ulcers or taking proton pump inhibitors as a preventive to getting ulcers.

With that said I am very sick and have started losing the weight I have maintained for years. I am pretty sure I have celiac disease as well.

11yrs post surgery I cannot stop the weight loss and within a few months I have dropped from a size 10 to a zero losing about 2 lbs a month regardless of how much I eat. Since November I have been going through divorce and lost medical coverage.

I was wondering if maybe you could share some of the symptoms you have because have so many and I'm wondering if they're all linked together,or I'd I have multiple issues going on.

I can telling you it feels like there's a bear claw holding on to my gut. Violently vomiting however nothing comes up, extreme depression, lack of energy, and the rapid deterioration of my teeth which I have read can also be tied celiac disease. all my symptoms started in May and have gotten worse not better, still losing weight even after switch to a gluten free diet. Any suggestions, nothing seems to be working, ans do not have the means to go see a GI doctor in order to get a complete diagnosis due to lack of medical coverage.

Any advice you many be able to provide me wuth I would be extremely grateful.

Shawna

[GixxerDiva 0]

I forgot to add in 2007 I became very anemic, was 3 units low on blood when it was discovered during an annual visit with the family practitioner. After 7 month of taking Iron pills without any results, I joined the cancer patients for several weeks. They recive their chemotherapy,as I received weekly IVs of iron.

[KyHiker 0]

I feel like I found my peep in you, Brandy. So it sounds like you and I have some similarity in our journey. I have a few recommendations for you that have helped me immensely. #1 read Hashimoto's, The Root Cause by Isabella Wentz. I felt like she explained my entire medical history. You may also consider The Paleo Approach, Reverse Your Autoimmune Disease and Heal Your Body. There's more out there too. The blog SCDlifestyles is worthy and I keep getting recommendations for The Body Ecology Diet, which I haven't read.

I went off gluten because my doc told me to and I felt bad enough to do it. And she recommended Wentz's book. Going off gluten I found out why I had choking spells since college. That said, going off gluten was hell, so I did the radical jump start with the amino acids that Wentz describes in the book, and my gut hasn't been this calm since I was a child, and I am not exaggerating. I'm now on a healing diet and admittedly a bit lost. I'm going to do some Alletess testing (food intolerance testing) and more research. Haven't been able to add many foods, so going to test vs elimination diet. I'm still working through things, but I feel empowered and hugely improved. A year ago I had chronic fatigue so bad I didn't do squat and every joint hurt, and for awhile my hand hung as if dead. I'm 51 and I get where you're coming from about feeling 80+. But 4 months into a radical diet and I'm getting closer to my age, but about 15 years to go, wink.

The the resources I provided are riddled with references to current research, but much of it is not known or embraced widely by allopathic medicine. Me, I'm just going for results, and radically changing my eating is giving me results. As Schoolass mentioned, when you eliminate foods that cause you problems, eating them again will amplify the problems, which is motivation to give them up! Keep your chin up and do your own research. I asked docs for 10 years and got nothing. Then I got sick enough to go to the internet and take responsibility for my own healing, and now I have hope. I didn't find that doc who told me about the gluten and Wentz book until I started my own research. I trust you will feel better if you work it.

[KyHiker 0]

So a resource blog that many of you may be interested in is SCDlifestyles. It lead me to many resources that helped me. I assume I'm gluten intolerant, not SCD, but it doesn't matter much either way you can't eat gluten.