deesmith

I just got blood results. Hemoglobin is 10.4 (which is pretty normal for me; I have thalasemia minor). But my iron level is 19- normal range is about 30 - 170. I changed doctors recently mostly because I keep still having low iron levels. I've been gluten-free since 2006. I think I've just stopped being able to absorb iron. I discussed this with my last doctor and requested infusions. She said "let's just see how you do with oral supplements." Well, all they did was test my blood over and over for about a year and half and half the time I'd have to call back and request that they retest it to see if it changed. No follow up at all. She never considered the infusions. So I switched. The only thing I've had done at new doctors is this blood work. Finally got results in mail that said take iron supplements. I know I'm not getting gluten in my diet accidently, because all other bloodwork is ok- even my PTH level (I have parathyroid disease from the celiac disease). Anyone else get infusions for iron? Anyone else have an issue with not being able to absorb iron anymore?

I've been gluten-free for at least 4-5 years now. Everything was going good for a while. I've been having issues recently. 1. Have had low iron blood tests for a while now (about a year), but the hemoglobin stays around 10 to 10.7 2. Had kidney function test last summer come back 53 or 57, can't remember right now. I changed doctors, AGAIN, and asked the new doctor to repeate the kidney function test. However, I was so worried, that I cut back on protein. The test came back 63, but my B12 came back low. I think it may have been the fact that I cut back ont protein temporarily (I'm normally a big meat eater). But I don't know if it can change that fast, over 2 week period. She said that since the kidney function came back 63 it was all fine. She told me to get B12 supplements, which I did. Apparently, by taking the B12 supplements, I brought it up to over 600!! So it can't be an absorption issue. And I don't think it would normally be low due to diet. I don't like that this doctor just tells me to take stuff, but won't determine why the blood work comes back as it does. My biggest concern is fatigue. I keep telling her, I've been anemic before. Before going gluten-free I was anemic all the time. Tired all the time. But this is different. I can't even function. I'm just not sure what to do next. I'm not looking for something to be wrong. Just to get back to feeling better. I've brought up my PTH levels over the years. (parathyroid disease) So it's not like I'm not trying! The doctor never sees me and just has her assistants call and/or writes letters. The iron is even lower now, so she wrote "just take two iron tables per day instead of one." I've told her over and over that I have severe constipation issues and I can hardly tolerate one. If I take two, I'll never go! I just don't know what to do next.

This may be old news, but just in case you haven't seen this: http://www.kingarthurflour.com/glutenfree/

Could be one of many things, but have your PTH level checked.

After being gluten-free for a year and a half, I felt soooo much better! Then, about a year ago I started feeling sick again. Symptoms: pain in upper left abdomen, especially after eating, nausea. Basically, I had to start eating really small meals or next to nothing. Oh, and the constipation I had suffered due to the celiac disease came back, worse then ever. Went to doctor year ago (new because I moved). He ran some blood tests and I stuff (whatever those test are for your pancreas. All negative. So, apparently my pain was supposed to disappear. I waited for my new insurance to start and saw the same doctor about 5-6 months later with same complaints. He decided that I need to see GI who only did endoscopy again, because I hadn't had one for 2 years. All negative, except the hiatal hernia I already knew about. Tried to be stricter about the hiatal hernia diet. Still in pain and having it get worse, I went to doctor again. I asked for a CT scan, which I had asked for all along. Today the doctor's office called and said they want to do small bowel study because they..... (wait for it....) think my bowels aren't moving like they should! I said, "I could have told you that without ANY tests." They are not moving. Have to take 2 senna and wait, wait, wait. Anyway, what could they see in small bowel that they didn't see in CT scan that may be causing problems? Any suggestions? I asked her what they would do if they determine that things aren't moving like they should. She said put me on medicine and stricter diet. I just want to feel healthy again.

I don't know if this will help you or not. I saw Dr. Green from the Celiac Center at Columbia University. He checked my PTH levels and it was way, way off. He said my parathyroid gland basically shut down and my body wasn't producing much calcium anymore. He explained that because of the Celiac Disease, I wasn't absorbing calcium. So it built up in my system and therefore my parathyroid gland thought there was too much and shut off. So then, because my blood needs calcium in order to function, my blood went to my bones to get the calcium-- leading to osteoporosis. So, at that time, my calcium level in my blood measured close to normal, but that's because it will go to the bones to get enough to try to stay normal. But, luckily, he had checked the PTH levels. But he said there was no reason for surgery because the parathyroid gland just wasn't working. It wasn't because of a tumor that needed to be removed. It was from the celiac diease. He said I would have to take 1600 to 1800 mg of calcium every day, and of course, be on the gluten-free diet the rest of my life. Also, you're correct in that it is near the thyroid, but has completely different function. Here's something similar from a link about it: "There is a growing group of patients who have dramatic life-long problems absorbing calcium in their diet. These patients are now illustrated on our graph in the purple area. These patients have a problem with their intestines that prevent them from absorbing calcium well. Since they don't (can't) absorb calcium from their diet, their NORMAL parathyroid glands will do what they are supposed to do... maintain a proper calcium level in the blood. There is only one thing these normal parathyroid glands can do... all four glands enlarge and produce lots of PTH which removes calcium from the bones--its the only place to get the calcium. The blood calcium is therefore maintained appropriately in the normal range (usually low normal between 8.2 and 9.2, but can be as low as 7.0) at the expense of taking calcium out of the bones. Thus these patients have very significant osteoporosis, high PTH levels, low normal calcium and high alkaline-phosphatase (shows increased bone destruction). These patients do NOT need their parathyroid glands removed. They have developed a total-body calcium deficit due to a longstanding inability to absorb calcium through their intestines." http://parathyroid.com/hyperparathyroidism-diagnosis.htm Basically it is the same thing Dr. Green told me. And it states they do NOT need the gland removed. Maybe talk with your Dr. about all of this or get a second opinion. Good luck to you. Also, hope you're taking calcium because the symptoms for this are crappy! Dee

In case this hasn't been posted yet.... I was so excited to read tonight about the Chex cereals. Then, I was looking online about them and found out that Betty Crocker (also GM) is coming out with Gluten Free Mixes!!! Here's a link: http://www.bettycrocker.com/products/gluten-free/ It's so good to see mainstream products going gluten free. Hope the trend continues. Dee

Thanks everyone for your really good advice. It is a funny situation. I'll be in a situation where I sort of am being judged and have to care what others think (although this shouldn't be the case during the lunch). But I also have to consider what is best for my health. Well, it's only one lunch. And whatever I choose to do, if it seems to be an issue, then I probably won't want to work there anyway. But thank you for giving me some ideas on how to handle it! I knew this was the place to come to. Dee

I need some help please! I have an all day interview March 30th which will include a panel interview, a few individual, one-on-one interviews, breaks, and a luncheon. The lunch is schedule for off-site from 12:00 to 1:30, according to the agenda I received. So any suggestions on how I should handle this? I am one of those that is highly sensitive to cross-contamination. Should I call ahead and speak with the coordinator of all of this and explain my dietary issues/concerns? Should I just pray they go somewhere like Applebee's where I can hope to order from their gluten-free items? I'm just worried we're going to walk into some place like the Olive Garden or something where I really can't order anything. There is a really nice Italian restaurant in the area (Keene, NH) where I'm going. I can't order anything there either. I deparately need a job and this seems like a really good one. So I don't want to blow it. Some people are okay with dietary issues and others just think you're weird. Thanks. Dee

Thanks for the great advice. I think I'll print this and take it with me! Thank you.

With luck, this may happen. If she's gluten free long enough, she may notice a difference. That's really good about your husband! Now you can be gluten free together.

Hi. Thanks for the reply. Don't families drive you crazy sometimes? I've seen a lot of others write on the board that their families are like this too. It's too bad. As you said, all we can do is be there to offer support and education when they need it and/or come to us. Dee

Thank you for the reply. I think you're right about my daughter. Well, I know you're right. She thinks I'm trying to convert her and she doesn't want any part of it. I'll try to be more patient. I think that she truly wants to help. She has a big heart and is always helping others. Maybe this will help her as well. Maybe being around it and learning about the diet, etc. will allow her to be more open about it. Thanks.

I've been going through some tough times lately. My job was really stressful and quite honestly a bad place to work. But that's not why I'm posting.... Long, long story, but I walked out one day when I couldn't take it anymore. I knew how stupid it was because I am the sole provider and need a job. So I have been out of work and no unemployment, no social help, since the end of October. Oh, I think I'm very employable, an MBA and all that. But I found out that my previous employer is giving a bad reference. Understandable to some because I left. But I had talked to my supervisor and complained about a coworker's bad behavior prior to my leaving. My supervisor kept saying I had a great work ethic, etc. etc. but we all needed to get along and I needed to be friends with her.... blah, blah. But again, this isn't really about my job. I have come to the point where I can't live on zero income and all my money has been dwindling away. My daughter has been asking me to move in with her for now. She lives in Nashua, NH. I told her at Christmas, when she came home, that I would and we'd have to make a plan about the moving. My biggest issue, and why I'm posting, is that my daughter does not like to hear about Celiac disease. She says that's all I talk about. However, we don't see each other that often, and when we do, eating is always involved. For instance, holidays, or we're visiting and she wants to take me out to dinner. So I have to bring it up. My son (in college) is very good about it and getting better. He said he doesn't think he has it but may get tested later on down the road. There is a 5 year age span with the kids and my daughter was home only some of the time that I was really sick. I got so much worse after she left home and my son saw all of that. That's why he's more understanding. The funny thing is I think my daughter has it. She doesn't have the gastro symptoms so she thinks I'm crazy to even think she might. But, she has Raynaud's disease, bone pain in hips, she's always tested anemic, and she's always tired. She's only 26 and I mean she's ALWAYS tired. You know, like us celiacs when glutened!! I'm so afraid of getting sick if I move in there. I'm very, very sensitive to cross contamination. I was sick for 2 weeks because my son has been home and brought it in the house. He saw what was going on and he said that won't happen again. He said he's so sorry he used my plates for his gluten! I said that's ok, the plates are washable. He just needs to clean up the crumbs better on my shelves! He said he won't have it in the house again. Most of my siblings act like it's something I made up and it's all in my head- celiac disease. And let me tell you, I have 6 siblings. Of the six, one has Lupus, one has RA, one has unexplained anemia. And only 1 of the six has gone gluten free like me. She is self-diagnosed. She weighs about 90 pounds. Anyway, I think my daughter has the same attitude as most of my family. So how can I convince her how serious this is? Sorry to rant on and on. Thanks. Dee

Hi, The parathyroid test is probably because he may be concerned about your calcium levels and absorption. Your parathyroid is called that because it is near the thyroid (para means near) but has nothing to do with your thyroid. So it is separate test from the thyroid tests he's already done. The parathyroid produces calcium for your bones and blood. If you are not absorbing calcium, then your blood will go get it from your bones, resulting in osteoporosis. He just wants to see if your parathyroid is still functioning and producing calcium. You are right, it does sound like you are in very good hands. Good luck with all of your blood work. Dee