Testing and symptom questions...

[michelepta]

I'm new to the forum and am checking in for my workaholic husband. Last fall he found out during a routine blood check that he was anemic and was put on iron. After two months of iron treatment he was still anemic and was sent to the Gastro to find the cause. (He also lost 18 pounds or about 14% of his body weight during that six months.) The strange thing is he felt fine-no diarrhea, no stomach pain, not unusually tired. He did say he just never felt hungry. Around January he started gaining weight again (he needed to) and his blood counts went up finally. He had a colonoscopy (normal), an endoscopy (was diagnosed with bad case of EOE-no signs of bleeding though), and his biopsy of the small intestine came back Marsh Scale One. They did a detailed check for Celiac which came back negative. (My husband has been extremely gluten free for three years because if he does get even a little gluten he has major stomach and bowel issues for several days; however, he is very careful and hasn't been knowingly contaminated in a very long time) The Gastro did a pill cam last month and that verbally the doctor told my husband last week was "signs of scarring in the small intestine that appear to be caused from crohns." Now they want to do the antibody testing (which our insurance will not cover). The Gastro made it sound like the antibody testing would be proof positive? Can you please tell me the forums experience with antibody testing. Is it totally off the wall that he could get anemia and loose all that weight and not be in pain? I will add for background info that he has other autoimmune issues-Hoshimoto's thyroid and psoriasis.

 

[peggyann]

Reply

Sounds like Crohns disease to me for sure. Strange that the doctor would not begin treatment immediately. Never heard of any antibody testing being proof positive for Crohns and if this were the case, why would they put the patient's through so many other expensive and invasive procedures to diagnose? I'd find a new GI doctor.

 

[StarGirrrrl]

I believe the test in question is called Prometheus and is a specialised blood test. The forum Wiki entry about this test is here:
http://www.crohnsforum.com/wiki/Prometheus-IBD-sgi-Diagnostic

One thing that jumped out at me is about gluten/Celiac disease. The blood test can be reliable and biopsies during upper endoscopy are considered "gold standard".

In addition to get the test result correctly you should be eating gluten at the time, so the antibodies are activated and show up in the tests. This might be something to discuss with your husband's GI?

 

[michelepta]

Three years ago he started having what we thought was gallbladder pain after eating-no diarrhea. After a gall bladder ultra sound showed nothing he asked our GP for a comprehensive Celiac panel. (His brother is Celiac by antibody and biopsy.) Nothing showed but he decided to go GF just to see and Voila! No problems. After two months he decided to eat gluten for Christmas dinner and he had diarrhea and stomach cramps for three days. Since that time he has accidently been exposed to gluten a few times at restaurants or friend's houses and has the same reaction. He is extremely careful. The GI mentioned a gluten challenge before this biopsy, but my husband refuses to even consider making himself sick. The Gastro seemed to think that if Celiacs was causing the iron deficiency, the biopsies should show a higher Marsh scale. We'll probably get the tests and pay out of pocket $800 I believe-although the nurse said they would call the company and ask for a discount they sometimes give. Two reasons: 1-with my husband feeling so well I don't think he'll go for meds unless its really proven to be crohns and 2-our 18 year old daughter has had anemia (docs blame her period) and periodic abdominal pain that awakens her in the night for two years and back in May she had diarrhea four or five times a day for just about the whole month. She's been checked for Celiacs, H Pylori, etc, but the Pediactric Gastro wouldn't scope her and when I finally was ready to throw a fit she started feeling better so I let it go. Although she is still on iron, Vitamin D, and B12 supplements for low levels. She also has thyroid problems and autoimmune hives so unfortunately it raises her risks for other issues and confuses the docs. Her autoimmune hives makes it impossible to do skin tests for food allergies because she would test positive for everything.

 

[StarGirrrrl]

I do feel for you all. Battling unexplained anaemia, low B12 etc myself at the moment! :ghug:

 

[michelepta]

I thought I would leave an update on my husband's status. We finally had our follow up appointment last week. The Prometheus IBD sgi Diagnostic came back "Pattern Consistent with IBD", but "Inconclusive for Crohn's Disease vs. Ulerative Colitis".

This is because he tested positive for so many things. His ASCA was positive (usually Crohns) and his PANCA (usually UC). A few of the other IGG responses were slightly positive as well. Genetically he tested positive for all four of the Genes that they test. Heterozygous for three and homozygous for the ECM1 (UC)

On the positive side-Extremely-ALL of the inflammatory markers were in range. So he seems to be in total remission right now.

The actual capsule endoscopy report (done in May, Prometheus done July) said "Apthous ulcerations scattered throughout the ileum." Thus a Crohn's disease diagnosis. The Doctor drew some more blood to test for nutritional deficiencies and inflammatory markers to make sure he still looks good and then will call with a medicine recommendation. Should get that this week. I thought this was prudent.

The GI Doc had actually contacted our primary and got a copy of his original Celiac panel. I guess it was for a very basic panel and hubby was barely negative. He said given a Marsh One biopsy on a totally gluten free diet and how sensitive he is to gluten that the hubby has probably got Celiacs too (hubby's brother has it.) If we wanted a firm diagnosis we could do a gluten challenge but he does not recommend it with the Crohns. I thought it was nice he pursued the issue as far as our kids go, but the hubby is GF either way. The hubby's brother is a little concerned because he still seems to have some GI issues on his GF diet so he's wondering if he has some other issue too.

The GI Doc listened to us about our daughter and said that he knew of a GI up in her college town that was one of the state's best IBD doctors for her to go to. Take the Prometheus test from her dad and she would not be blown off and told all her iron deficiency issues were from her period and not her constant tummy trouble from her "stressed out, over-achiever personality." She all ready changed her schedule so that she has a day every week where she has no classes so she can make Doctors appointments. I hope her tummy troubles just melt away, but if she deals with it now she might avoid a more major issue.