Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Negative Tests, But Severe Anemia
0

4 posts in this topic

My gastroenterologist has been after me for over a year to try a gluten-free diet. I have always been a big wheat-eater (grind my own flour, etc) and seemed to do fine with it, but have had bouts with unexplained anemia off an on all my life.

Four years ago I contracted West Nile Virus and my immune system seemed to go haywire after that. My hemoglobin kept dropping until it got down below 5 and all my doctors were freaking out. It looks like plain old iron deficiency anemia, but iron supplements and a diet high in iron don't help. I'm now to the point where I need transfusions so I decided to give the diet a try.

My blood tests were all negative, DNA showed positive for DQ8. I haven't had a biopsy because of high risk of anesthesia reaction (I have three other rare genetic diseases that complicate things). I'm very allergic to rice and soy and react to corn and tapioca if I eat them often. That doesn't leave a whole lot in terms of carbohydrates and I need 400 grams a day.

I actually got through the first week with no wheat cravings and no weight loss. I can't say that I feel any differently and my hemoglobin is still the same. For those of you who have had anemia, how long did it take for you to start seeing a change in your lab results?

Jan

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi Jan,

My hemoglobin was at 8 just before I was diagnosed. In 6 months, it was up to 14.5--the highest it's ever been. Before getting so low, it had been at 11.5.

The first 3-4 months gluten-free, I was still very tired and worn out. Somewhere around the 4 month mark, I turned a corner. Hopefully, you just need to give it more time. A week is just not enough to notice a difference.

0

Share this post


Link to post
Share on other sites

Thanks - I know it will be a long haul and am willing to give it time, but I'm hoping it won't take too many weeks for the hemoglobin to start rising so I can avoid the transfusions. The lowest it has been is 4.3...that's considered critical and my doctors don't know how I can even walk around.

Last summer I tried all kinds of iron supplements and got severe gastritis which still hasn't completely healed. I can't do iron IVs or shots, so transfusions are my only other recourse and I hate to risk exposure to anything else. I know they say the blood supply is much safer, but I've had friends who contracted HepC, HIV and herpes infections from supposedly safe blood.

You give me hope that I may have some energy again some day - it's worth the wait!

Jan

0

Share this post


Link to post
Share on other sites

I think mine was around 9 the last I was tested in late January and my doc said that I'd probably have to go about a year before getting it to something normal. We're in mid-April now and I'm feeling a heck of a lot better so, probably you should be thinking something long-term, although it does get gradually better unlike celiac healing, which seems to have its own agenda. :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined