Hi All,

A nurse from my GI docs office called today with my test results. The TTG was negative so I am assuming no Celiac Disease? However, my Ferritin level was very low at 7 (normal range 20-155) and she didn't give me the normal range but said my TIBC level was high which I guess is another indicator of iron defiency. He wants me to take 325mg of iron three times per day.

I don't know much about this and I am going to do some searching to find out what are some of the causes for this and what I should be aware of but does anyone here have any helpful advice or suggestions on what might be going on? If you didn't get a chance to read my last couple of post on this forum, I suffer from weight loss, fatigue, weakness, hair loss, abdominal discomfort (especially after eating), tachycardia, etc.

I feel more confused now than before . I really feel like this is just another piece of the puzzle but they still haven't figured out what's really going on.

Thanks for your help!

Daisy,

I'm wondering it they ran any of the other tests besides the anti-tTG. I know they often don't.

Again, so many of us fail the tests for celiac disease, but we fit the picture, AND respond to the diet. I hope you will consider a dietary trial.

Cara

Hi Daisy,

I had this nice message composed to you which I lost when our power went out! We had a snow storm last night, and the leaves are still on some trees, hanging over powerlines, I'm sure.

Anyways, the fact that you have abdominal discomfort after eating definitely points to some kind of gastrointestinal problem, IMO. Cara's The Gluten File/Diagnostic Testing page describes in detail all the testing to have done to diagnose celiac disease. You may want to write it down, and take it with to your doctor. Yeah, seems that the doc should know, but even if they don't, hopefully they'll do the testing you ask for. Keep in mind that you may be gluten sensitive and not be diagnosed with celiac disease. I think even less doctors know about this. Check out the link to "Not Celiac?" as well.

You may consider getting tested through Enterolab. This is what I did, and you don't need a doctor's order to do it. Lots of good information on gluten sensitivity on their website. I like the gluten panel, that tests for gluten sensitivity, casein sensitivity (dairy), malabsorption, and genetic testing. It's around $370 total, well worth it IMO. And, you don't have to argue with a doctor to get the test!

I understand the need to get tested to find out what's wrong. Even if you do or don't have celiac/gluten sensitivity, you could also have something else going on that is related to these conditions, like other food sensitivities or a pathogen of some sort. I just found out I have a bacterial overgrowth of the bad bacteria in my gut. I have been trying to track this down for a long time. My regular GP did not test me for this, but I kept pursuing it, because I had a feeling I had some kind of pathogen. All the other obvious parasites were ruled out. I decided to go this route first before getting scoped. I had surgery for something else in April, and I didn't want another invasive procedure!

Claire

Have you been checked for thyroid? Many of those sounds like hyperthyroid symptoms.

But a negative TtG doesn't rule out celiac. Only a biopsy can rule it out.

However, neither one can rule out gluten sensitivity. I discovered GS for myself by just going on a gluten free diet, then I got confirmation with Enterolab.

Thanks Cara, Claire, and Nancy! I'm so glad I found this forum to help make some sense out of this stuff.

Cara, I wrote down the tests that he ordered so I would remember them and the only Celiac specific test was the Tissue Transglutaminase Antibody. I've found so much information (here and other sites) that recommend running more than just that one test so I am going to ask my Primary Dr. about it this week.

Claire, I'm sorry you lost your power and the message that you had already written. I know it takes time for some of these replies and appreciate you writing it again. If my Dr. is not willing to run the additional tests I will check on the Enterolab testing. We have good insurance and I really don't want to have to pay for it out of pocket but, like you said, it may be well worth it.

Nancy, you must be at least the 12th person who has asked me about hyperthyroidism and, you're right, I do have ALOT of the symptoms not to mention a long family history of thyroid disease and thyroid cancer. But, I've been tested (TSH and Ultrasound) and they keep telling me that my thyroid is normal. I'm definately not overly anxious to jump in and have a biopsy but
I guess I would if my doctor strongly recommended it.

Also, I'm not sure if this is the right forum to ask this question but does anyone have any knowledge or information about iron deficiency? My GI docs nurse said that he wants me taking the max amount of Ferrous Sulfate (325 mg three times per day) because I'm very iron deficient and he doesn't want to see me back for two months to check the iron levels again. Is this normal? From what I've read, there has to be a reason for iron deficiency (malabsorption, blood loss, etc.) and that should be investigated right away. I do take daily asprin for a blood clotting disorder so I am wondering if I might be losing blood somewhere inside. Should I wait the two months or try to get someone to check this out sooner? I hate to question what my Dr.'s are telling me to do but I don't want to take any unnecessary chances. Am I over reacting?

Again, thanks for all the help!

My 15 year old daughter has been anemic since June. Her ferritin was initially 5. She started on iron supplements and the ferritin rose slowly to 11 over a couple of months. The pediatrician then told me it was normal. I pointed out to him that it was the bottom of a very big range and that Adequate iron replacement has typically occurred when the serum ferritin level reaches 50 µg per L http://www.aafp.org/afp/990315ap/1598.html

We then checked to see if she was loosing blood through her urine or stool and blood was found in her stool samples. I feel if we had checked for blood loss in the beginning she would be 2 months closer to feeling well. We are now working with her GI doctor on this and although she is able to go to school and play sports she really bottoms out on energy. She also has had ongoing hair loss that has yet to resolve.

It sounds like you are starting a high dose of iron sulfate. You may need to take a laxative also. My daughter is taking a form of iron that is supposed to be more bioavailable (http://www.myvillagegreen.com/detail.aspx?ID=727). I am beginning to wonder if a different iron supplement might work better for her.

Based on our experience you should ask you doctor to check for blood loss now rather than wait for 2 months. You can pick up the stool cards (we did 3 double cards) and they can check them in the office. There really should not be a lab fee for that.

Keep us posted.

--Judy

Judy, thanks so much for sharing your daughter's similar experience. I have an appointment with my primary Dr. on Wed. and I hope she will share my concerns with this and go further with the testing. I've been on the 81mg daily asprin for four years now so I think the possibility of blood loss needs to be checked.

If you don't mind me asking.....did your daughter have any low blood levels on her CBC before the blood was found? I ask this because I have had a chronically low WBC for at least 4-5 yrs. The RBC has dropped below normal a few times and when it is not below normal it is right on the edge. Same with my hematocrit and hemaglobin.....right on the edge of being low. Just wonder if all this is related???

I think you should rule out blood loss right away. I think that the asprin could be causing intestinal bleeding. My MIL was taking coumodin and asprin together at the advice of her doctor here. She was getting weak and anemic. She was visiting her daughter in Florida, and finally she felt so bad they had to take her to the hospital. They figured it out pretty much right away, being used to working with the older population, and said that you shouldn't take asprin on top of another blood thinner, coumodin! They scoped her, and found out she was having bleeding in her digestive tract. Once she stopped taking the asprin, that pretty much cleared up her problems.

By the way, you should always question what your doctors are doing. They are not infallable. I don't think you are over reacting at all!

Claire

Yeah Claire, I agree with you and Judy that blood loss needs to be ruled out right away. I was also on Plavix for 3 1/2 yrs. along with the asprin but was told I could discontinue it about 6 months ago. These were my blood levels back in August:

WBC: 2.8 (4.6-10.2)
RBC: 4.11 (4.04-5.48)
Hemoglobin: 12.2 (12.2-16.2)
Hematocrit: 36 (37.7-47.9)

These were from a few months ago so I don't know where they're at now. Thanks for all the advice and input...I really appreciate it! I'll post an update after I see my Dr. on Wed.

I have been going through a similar situation. I had low fettitn and high TIBC as well. My docotor is looking into b12 deficiency. I don't know much about but maybe this is your problem as well. Try looking on b12.com