Questions- Need Clarification, Help

[ocdsgirl]

I have a feeling this might get lengthy- sorry!

I have a son that will be 12 in a couple of months. He is a little guy and weighs maybe 60 pounds. Off and on he has had gut issues- mainly constipation, upset stomach, etc. He went to a GI doc last year, but they initially weren't a lot of help. Back up to a little about me- me(and my family) have big GI issues, as well as other autimmune issues. I have ulcerative colitis that is chronic and has never gone into remission.

My son started getting imflammation in a toe a few months ago, that really looked like arthritis. He has had lots of tests done so far. He was referred to a rheumatologist who immediately zoned in on gut issues. She did x-rays and took about 7 tubes of blood for various tests. She called today and had to leave a message, so I haven't spoken with her yet. She said that his "ttg" levels were high and she wanted to have him scoped for Celiac and Crohn's. I have no idea what she means by high ttg levels ("trans- something or other"). Does he have to have the scope? Is one test more reliable than the other? What if the scope doesn't indicate anything- should I trust the blood test or the scope? Would that be more indicative of Crohn's or Celiac? They almost seem like the same thing

I just want him to grow and get better. Thanks so much for any help!

[Cindy G]

Hi ocdsgirl,

I felt compelled to reply. Exactly one year ago I was in your shoes, trying to figure out what was wrong with my 8 year old daughter. She was underweight (growing taller, but not gaining), and complaining of an undefined but scary feeling in her stomach. She was truly panicked by how she was feeling. I did alot of research and thinking and it seemed to me that wheat might be the problem. Her doctor said that her symptoms were not indicative of celiac disease, but I insisted on a blood test. Boy, did her doctor eat her words!!! (Chalk one up for doctor Mom!)

My daughter's TTG IGA antibody test came back at 204.8 (very high!) Normal would be under 20. With a number that high it is about 95% likely that a person has celiac disease. She had a scope (BIOPSY OF THE SMALL INTESTINE) which confirmed celiac, and she has since been on the wonderful road to recovery. Since August 7th, 2009 she has been on a gluten free diet. She has gone from 55 lbs to 70+, grown taller, is up 2 sizes in clothing, and MOST IMPORTANTLY she feels great. My 11 year old son was tested in December (He was not symptomatic - or not like my daughter was - except for being small in stature) My son SURPRISINGLY is celiac as well, and is now gluten free.

I do not have any experience with Chrone's disease. I do know that often one autoimmune disease makes you more suceptible to another. I know the idea of a biopsy seems scary, but it is the only way to positively confirm what is going on inside. If your son's diagnosis is Celiac disease, please know that there is support out there and that by changing his diet he will be feeling better REAL SOON!

Good Luck!

Cindy G

[skigirlchar]

often times the blood work gives false negatives

i had the scope - and while the dr didn't find damaged villi representing celiac, (i had already started to go wheat free prior to the scope) he was able to see OTHER damage and thus I am now following the diet.

in truth, i don't do well w/ most "invasive" medical procedures (pretty much anything dealing w/ anesthesia my body reacts in an abnormal way.) this was REALLY VERY EASY. if there was any scope discomfort i didn't notice it over the discomfort i was already feeling. the hardest part of the day was finding a vein in my dehydrated body - they needed to use a NICU needle (they had started w/ a pediatric needle) in my "crappy" veins.

i have one friend who actually was awake for her's (she has severe anesthesia issues) and was actually allowed to watch both her upper and lower endoscopy's on the screen while the procedures were being done and the dr talked her through it.

i have a number of friends w/ chrone's - all went through the biopsy. all are doing much better now that they have the definitive diagnosis and know what they are working with.

yes, it will be tough, but in the long run your son will feel so much better if you know what you are up against and what protocol to work with.

[ocdsgirl]

Thank you for your replies. His doctor said his Ttg level was at 35 (I think that's right), and 0-19 is normal? Does that sound right? What's funny is I went to have a screen at a clinic about a year and a half ago (after being almost completely gluten-free and then falling off the "wagon" for a few weeks), and my Ttg was at 19, which was said to be normal, but I wasn't aware of the "cut off" or range of normality. Hmmm... I wonder how often people have positive screens and negative biopsies. I have UC, which is what I call a "sibling" of Crohn's- and it is impossible to get under control. He just hasn't had the hideous diarrhea that is a big Crohn's marker. But I realize you can never be sure because I have UC, and my problem has almost always been constipation. He also has arthritis. I felt bad for him last night, his tummy was sore sore! He has a consult on June 8th, so hopefully if he is going to have to have other procedures done, they will schedule it right after that!

[WheatChef]

19 is a very old upper limit. The current recommendation is much lower, I believe somewhere in the single digits. While technically this would result in a weaker positive all that means is that they are less likely to be able to find the damage. This still means that your body is actively attacking it's own cells, in response to consumption of gluten which is not a good thing. With a result of 19 you should be aware of UC being related to gluten problems in many people.

The small intestine is not all that small. Unless they remove the whole thing they are liable to miss the damage unless it is severe. This is how positive screens lead to negative biopsies.