negative biopsy, so confused?

[kitty4751]

hello all. any help is appreciated, thanks in advance! Interesting story here, sorry it's quite long. 

I'm a 22 yo female. I've had GI discomfort for much of high school and college, namely frequent constipation and bloating, abdominal pain. I haven't exactly found the foods that trigger these symptoms. This past year I trained for a half marathon, but had to stop because of awful shin splints. It's been five (!!) months since the shin splints started, and just now are they healing. I had xrays and MRIs - no stress fractures. I didn't run at all during this time to give them rest to heal. I was bruising so so easily, I would get welts all over my shins and calves, just from walking! I also had numbness and tingling in the legs. These odd symptoms prompted my primary doc to do blood work. Here's what came up:

Assay of gammaglobulin: total IGA 360 mg/dl standard: 50-500, total IGG 1260 mg/dl standard: 650-2000, IGM 95 mg/dl standard: 40-270.

Cyclic Citrullinated peptide (anti ccp) 32 units, standard: <= 19 units. 

This elevated anti ccp antibody prompted my doc to send me to a rheumatologist, who ensured me no I do not have rheumatoid arthritis and that this test was probably a false positive. I don't have swelling or pain in the joints, so okay I'll buy that.

I saw more doctors because I was fed up with my legs not healing! I had a more detailed celiac panel and vitamins checked: 

ferritin: 10 ng/dl standard: 10-154, total  iron binding capacity: 532 mcg/dL standard: 250-450. 

vitamins b12 and D are in normal range. 

gliadin (deamidated) IGA AB 8 units, normal: <20 

gliadin( deamidated) IGG AB 3 units, normal: <20

TTG IGA 4 U/ml, >= 4 means antibody detected. 

When the nurse called she didn't mention I've got iron deficiency anemia, but I suppose I do from those numbers? The ever so slightly elevated ttg IGA prompted me to have the biopsy. The initial report states irregular Z line, gastritis and duodenitis. The pathology came back negative for damage to the villi, so I was told no celiac. I'm not sure I buy this, did the scope not go far down enough, did she take enough biopsies? I was told I have Barrett's esophagus and intestinal metaplasia of the stomach. I will likely have to try Prilosec for this, but I don't really have heartburn? I will also have to have another endoscopy in 6 months to a year.

Other symptoms I have are always being cold, canker sores that seem to arise when menstruating, and anxiety which I am prescribed lorazepam for. Significant weight loss while I was running, and then weight gain when I stopped. Sometimes I have heart palpitations. Fatigue, but I've been attributing this to doing less exercise from this injury. 

Maybe I'm fine and my blood is just wonky, I don't know, I just want my leg pain to go away so I can get back to running. Any help is appreciated, thanks! 

 

 

[Fundog]

Your iron is on the edge between normal and deficient.  If you were pregnant, they might recommend an iron supplement, but otherwise, try increasing your intake of iron rich foods, like spinach.  Not coincidentally, spinach is also very high in folic acid!  FA and iron need each other.  They work as a team.  In addition, how much vitamin c are you getting?  Iron also needs vitamin c in order to be more easily absorbed.  They are BFFs.

 Ask your doctor what CCPs are, and the role they play.   Go back in there with a well thought out list of questions (write them down) and make them explain everything to you in detail.  Your problems don't necessarily have to be celiac disease.  What you already have going on is serious enough by itself, and could have something to do with your inability to heal.  Make sure you are getting enough calcium too.

[Jmg]

I wouldn't want to write anything that will stop you pursuing definitive answers, that's really important. As above, your problems may not be celiac. However, if your doctors have ruled out Celiac you have nothing to lose, and potentially much to gain, from trialling the gluten free diet. 

This:

On 8/9/2016 at 4:11 PM, kitty4751 said:

The pathology came back negative for damage to the villi, so I was told no celiac. I'm not sure I buy this, did the scope not go far down enough, did she take enough biopsies?

was exactly my reaction after my negative biopsy. However i already knew I would be going gluten free based on my reaction to the diet, so it didn't matter so much. 

Some of your symptoms, always being cold, canker sores, anxiety were also mine and also resolved on gluten-free diet. Do keep pursuing answers, but if testing is complete, give a gluten-free diet a try and keep a diary to see if you can spot any linkage between diet and symptoms.

Best of luck

[ironictruth]

ferritin: 10 ng/dl standard: 10-154, total  iron binding capacity: 532 mcg/dL standard: 250-450.

Your ferritin is low but the capacity is high. Was there a saturation percentage? 

My ferritin and iron were dropping and i took iron for several months. However, my saturation or TIBC were never above range.  So honestly, I would not take iron until you get that checked out.

The best luck I have had was with an endocrinologist who is pretty integrative. Maybe ask your doc to see one?