BrainTalk Communities 10/2006-8/2011 Archives  

Go Back   BrainTalk Communities 10/2006-8/2011 Archives > Specific Neurological Conditions (A - L) > Gluten Sensitivity / Celiac Disease

Reply
 
Thread Tools Display Modes
  #11  
Old 11-07-2006, 08:25 PM
annelb annelb is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 1,425
Default

Becki, has your mom been tested for CD? Is she GF? Here is an article about hematological manifestations of celiac disease.

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

I hope your mom can get answers.
Anne
Reply With Quote
  #12  
Old 11-07-2006, 10:13 PM
klasyjo klasyjo is offline
Community Member
 
Join Date: Oct 2006
Posts: 39
Default

Quote:
Originally Posted by annelb View Post
Becki, has your mom been tested for CD? Is she GF? Anne
Mom's initial labs showed negative for Celiac but they only ran the most basic tests which, as we know, are NOT (sorry forgot that but looks like you knew what I meant) always correct so she's not GF and said she wouldn't do it even if she was - stubburn as a mule I tell ya but she's a nurse. She does have Addison's Disease which is directly linked to Celiac by the HLA DQ 2 gene. I'm hoping that by going w/her to this specialist and filling my head with knowledge (hopefully I can remember all of it) we can get some answers. I just don't want her to have a blood infection that would lead to the same as my great uncle - her uncle. Right now her family doc (a loon in my opinion) keeps putting her on & off iron, the iron upsets her tummy so much from the cortisone she has to have for the addison's. It's just as frustrating for all of us as it was when I was trying to dx for Celiac.
__________________
Becki

Hashimotos, Ehlers-Danlos Syndrome Hyper-mobility Type III, Osteoarthritis C5-6-7 L4-5 S1 w/slight narrowing of disk space, Pre-Osteopenia in both hips, Herniated Disks T8-9, Cervical Lordosis, Sciatica, Facet Arthropathy, Sinus Polyps, Lymphadenopathy, Migraines, Spina Bifida Occulta and Celiac Spru
Vitamin deficiencies B1, B6, Carnitine and Magnesium
Allergies: Morphine, Demerol, Darvocet, Vikadon, Ultram/Tramadol, Sulfate, Duragestic

Last edited by klasyjo; 11-08-2006 at 09:02 AM.
Reply With Quote
  #13  
Old 11-07-2006, 10:31 PM
annelb annelb is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 1,425
Default

Quote:
but she's a nurse
I know how stubborn a nurse can be - I am one Nurses and doctors - they are the worst patients.

I am sorry that she will not consider going GF. I know that steroids can affect biopsies. I would think they could give you a false negative blood test too.

Coeliac disease and autoimmune Addison's disease: a clinical pitfall

I can only get the title of this one: Adult-onset celiac disease hidden by chronic steroid therapy for a skin disease.

Anne
Reply With Quote
  #14  
Old 11-07-2006, 11:18 PM
mamamakk mamamakk is offline
Community Member
 
Join Date: Oct 2006
Posts: 89
Default

I am all too familiar with IV iron and low ferritin levels. I have had persistent iron deficiency anemia for the last two years. Initially, my docs attributed it to heavy periods and uterine fibroids. I had the fibroids removed, the periods greatly improved and I was started on high dose oral iron. Low and behold, my anemia persisted and my ferritin level was 3.

My PCP called me at work when the test results came back and told me that I needed to have an EGD and colonoscopy because he felt I must be bleeding via my GI tract to have a ferritin level that low. I told him that I hadn't noticed any bleeding but I ended having the tests despite my protests.

Nothing obvious was noted and I was told to continue with my oral iron and see the hematologist. A month later, I was even more anemic and more iron deficient so they had no choice but to start IV iron. I had a 9 week course of IV iron. One dose of iron dextran and eight doses of ferrlecit (sodium ferric gluconate). My ferritin level went up to 169 and my doctors told me that my iron stores should be good for 1-2 years.

Within three months, my ferritn level was in the 30's and by the 5 month, I was already iron deficient again. I have had to re-start IV iron and I am doing it currently. So much for 1-2 years of tanking me up with iron. This was one of the many clues that led me on the CD path along with low vitamin D, B12, loose stools alternating with constipation, death cramps after eating bread products, a large weight loss, and finally positive tests results from Enterolab.

IV iron is, unfortunately, no panacea. Most people do not feel great after it and it has fairly high reaction rates. I happen to be one of the people who reacts to it. It takes a fair amount of time to infuse, it is costly and it is difficult to arrange around my work schedule. It takes a whole day away from me each week and then I have flu-like symptoms for 1-2 days following each infusion. I end up doing the infusion on a day off and then work the following two days when I feel crummy. I have to be given tylenol, benadryl, and IV steroids before each dose and often require IV benadryl and steroids during the infusion. You have to get a test dose before every infusion since you can react to any dose and at any time during the dose per my hematologist.

I then experience chest pains, hives, fast heart beat, palpitations, shortness of breath, swollen tongue, difficulty swallowing, etc for days afterward and have to pop benadryl like it is candy even when I am at work. It does bring your ferritin level up quickly but with side effects and you need to be aware of them.

Most hematologists would treat your daughter with a trial of oral iron first since she is not anemic. Most would do this even in the face of anemia. You may want to look at your options and the pros and cons of the IV iron vs. oral. If ahe does become anemic or she doesn't seem to be able to absorb iron from her diet or as a supplement, then you will have no choice.

As far as your question regarding symptoms of a low ferritin level, there are none unless you progress to iron deficiency anemia. There are a few studies out that show some women with a low ferritin level have increased fatigue and athletes can have decresed performance.

I have been on a gluten free diet since May of this year and I was really hoping that the cause of the anemia was the CD. I was very disappointed when my ferritin levels continued to fall so this has left my doctors and I looking for others causes.. Maybe I just need more time to heal. It sounds as though you have found a knowledgable doctor for your daughter and that he will be able to find the and treat the cause. Just make sure that the cause of the low ferritin level is identified and that they just not treat the low level. That is what they tried to do in my case. Good luck to both of you.

Last edited by mamamakk; 11-08-2006 at 12:34 PM. Reason: Typos from multi-tasking
Reply With Quote
  #15  
Old 11-08-2006, 10:20 AM
JudyLV JudyLV is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 159
Default

Mamamakk,
I am sorry to hear that you are still struggling with low ferritin. Just last night I was thinking I should research IV iron to see if that might be helpful for my daughter. After reading you post I will just wait for further test results. One additional test they are doing this week is the reticulocyte count to determine if the bone marrow is making enough red blood cells.
http://www.webmd.com/hw/lab_tests/hw203366.asp

--Judy
Reply With Quote
  #16  
Old 11-08-2006, 12:28 PM
mamamakk mamamakk is offline
Community Member
 
Join Date: Oct 2006
Posts: 89
Default

Whoops, I should have mentioned the reticulocyte count too. I have that checked each month along with all my other blood work and it is almost always high. This would indicate that my bone marrow is having to crank out new red bllod cells at a high rate to make up for the ones that are being lost. The most likely cause, I have been told, is bleeding from the GI tract.

In fact, the hematologist had me re-start the IV iron when my reticulocyte count dropped and I started making abnormal red blood cells that were lacking in iron.

Obviously, the losses could be menstrual if one happens to be a women and premenopausal but blood lossess from periods are difficult to quantify. Far too often periods or pregnancies are blamed in this patient population, when they really are not the cause of the problem. It is much easier for the doctors to be aggressive about seeking a diagnosis in men or women after menopause, that have low ferritin levels or anemia because the whole monthly cycle issue is not an issue.

In fact, there are very strong recommendations that GI doctors are to follow in trying to diagnose anmeia in these groups and it starts with the EGD/colonoscopy and goes to very invasive tests like mesenteric angiograms.

I can now say that I know much more about red blood cells and iron than I could ever have imagined I would.
Reply With Quote
  #17  
Old 11-08-2006, 09:14 PM
annelb annelb is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 1,425
Default

Mamamakk - sorry that the GF diet did not help. Are you still GF? I have met two people who were getting blood transfusions for their anemia and both cleared with a change to GF. It would have been easier if you had the same result.

There are ways to look at all of the small intestine. There is capsule endoscopy and double balloon endoscopy. DBE is fairly new. http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
Anne
Reply With Quote
  #18  
Old 11-08-2006, 09:47 PM
lisajean lisajean is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 196
Default

They (Mayo docs) wanted Hannah to have IV iron because she is so ill, in hopes of alleviating some of her symptoms. Iron is not the cause or the cure of autonomic dysfunction (AD) but because there is overlap of symptoms between AD and low ferritin levels they wanted to jump on anything they could. Hannah is basically homebound at 18 so we are pretty desperate for any help she can get.
As for the actual iron infusion Hannah tolerated it well. They premedicated her with IV Benedryl, did a test dose of Iron Sucrose (which the IV nurses said was generally the most easily tolerated) and then an hour later did the full dose. She had no side effects at all. And Hannah tends to react to almost everything!
We don't know why her ferritin is low but for now assume it is because of CD. I would imagine if she continues to have problems this will be investigated further. It just makes me so mad that her levels were low three years ago and we were told its because she has periods. I even had them test her urine and stool for blood but it came back negative. But that was before her CD diagnosis. Anyhoo, I'll keep you posted on how her next IV goes and if she has any symptom relief.
hugs,
Lisa
Reply With Quote
  #19  
Old 11-08-2006, 10:08 PM
mamamakk mamamakk is offline
Community Member
 
Join Date: Oct 2006
Posts: 89
Default

Hi Anne,
I am definitely still gluten free. My GI doc wanted me to do a gluten challenge and then redo my EGD/colonoscopy but I said no way!!! I could find no rational reason to reglutinize myself. I am scheduled to do the capsule endoscopy but they wanted me to do a small bowel series first because I am still having really severe bloating issues.

They were afraid to have me swallow a capsule and then have it get stuck in my small bowel along the way. I had so many GI surgeries in 2004, they were worried that there were adhesions. They did not see any obvious obstruction so I will swallow the capsule. It is like the movie, The Fantastic Voyage.

To Lisa,
I am glad that your daughter tolerated the iron well especially since it sounds as though she really is in a situation where she was needing it so badly. They have tested my stool several times for blood but it is always negative. I always have a small to moderate amount of red blood cells in my urine though and no one knows why but they said that those losses could not explain my anemia. Go figure? I hope your daughter starts to feel better soon. She is so young to be feeling so poorly. I think I am too young to feel like this but at least at her age, I felt great. I will be thinking of her. Let me know if I can be of any help.
Reply With Quote
  #20  
Old 11-10-2006, 06:39 AM
Hanna Hanna is offline
Community Member
 
Join Date: Oct 2006
Posts: 83
Default Son 14 years of age

I am frantic. September, they found h-pylori, discounted cd (Enterlab HB2 and HB1) and had 6 hemoglobine.

Today after daily tablets of iron: hemaglobine 13.1, iron 12 where it was 23 last month; and ferritine 29 where it was 41 last month.

Does this mean he is getting gluten somewhere. His treatment of h-pylori did not work?????????? He still gets exhausted easily. He is also growing rapidly.
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -4. The time now is 06:17 AM.


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
BrainTalk Communities Incorporated