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Posted By : Dana68 - 2/7/2017 7:56 AM
I was just wondering if others are anemic. I am just trying to figure out where I'm at in this dreadful disease. I liked it much better when doc would blame ibs or having no gallbladder. I just don't understand how I went from being so active & productive to this. I am down 10lbs I weigh a whole 108lb & that is with clothes! I went to gp the other day & tried to tell him how bad I feel & all I got was the only thing wrong with you is you have celiacs disease & ibs you need to get your nerves under control! Well if I would of had a compitant doc the last 13 yrs that would of listened to me instead of dumping everything into ibs maybe I wouldn't be in this shape! Sorry for the rant I'm just so frustrated. I go see gastro next Tuesday & I cannot wait. My daughter in law works there & thinks he would be the best fit for me because he also has celiacs. If nothing else he should be compassionate.

Posted By : straydog - 2/7/2017 10:05 AM
Hi Dana, so glad to read you are going to a gastro, hopefully you will get the care you need. You may want to consider looking for a new primary care dr. I do not like having to change drs, but when they stop listening, its time to move on & find one that does listen. You may want to look for a good internist. Their approach is different than GP's. They treat the body as a whole. Remember, you are paying these drs, they work for you.

I too have issues with anemia & my dr has me do monthly B12 shots. It took a bit before I could really tell the difference. I have crohns & have absorption issues as a result of resection to the small bowel.

Let us know how the appt goes. Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Dana68 - 2/7/2017 10:36 AM
Straydod, what do you do for the anemia? So far my gp has just told me to take multi vitamin. It's not working. My muscles feel drained, I'm jerking & twitching, can't sleep. How in the world do people work when they have this? My doc did not even refer me to gastro. I pretty much had to step on his toes & had my daughter in law get me in. Then my doc told me I didn't need scoped that I was checked & cross checked that it is celiacs. I'm going to let gastro do what he needs to.

Posted By : straydog - 2/7/2017 11:23 AM
I was put on B12 shots for the anemia. Once the initial dosing was done I went to a monthly shot. I think your gp did you a great disservice by not referring you out to a gastro to get the proper testing to make a correct diagnosis. My neighbors daughter had quite a bit of testing done before she was diagnosed with celiac. There are so many things that can cause fatigue & being blown off by the dr is wrong.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Dana68 - 2/7/2017 7:08 PM
Yes I know he has. That's why I made my own gastro appointment. He has not even checked my b12. Do you think it would hurt for me to take some otc b12?

Posted By : Dana68 - 2/7/2017 7:22 PM
Okay I have been so sick I must have been out of my was not a stool test that he used it was gliadin igA an resultpositive. IgA 205 refer range 65-421. Tissue tranglutaminase 29.39 refer range 0.00-15.00. So what do you think, do I need scoped? By all means if the gastro thinks I need it I will let him. But idk about eating gluten!

Posted By : straydog - 2/8/2017 6:24 AM
Dana, I would wait & see what the gastro thinks needs to be done scope wise. My neighbors daughter had various scopes done in order to get the correct diagnosis. Trying to rely on labs alone is not the proper way to diagnosis this. If you are trying to go gluten free at the moment I have to wonder how it will affect future testing, I am not sure.

I would not take B12 without having the proper labs done, may be something the gi can check if he orders labs.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : cyclinglady - 2/9/2017 2:41 PM
Hi! I have CD and had my gallbladder removed prior to my diagnosis. You tested positive to the celiac blood panel. The next step is to be referred to an GI to obtain biopsies VI's endoscopy. You have to be on a GF diet to do this or go back on one for a period of two to four weeks prior to the endoscopy.

The learning curve to The GF diet is steep. It takes most celiacs one to three years to recover. I kid you not. An endoscopy can also rule out other issues that you may have going on concurrently. See a GI.

Posted By : Cary Opteris - 5/6/2017 5:05 PM
Hi! I see this is from February but I just joined. I was told I have Celiac back in 2009 and have been gf since. I also take supplements, including iron and magnesium citrate (citrate is good for me because I have constipation due to a long and twisted colon). If you have fast digestion you may need a different kind of quality mag. Recently I started B complex and a kelp supplement because I'll try anything to fix my psoriasis, and that is actually improving now. I take lutein for my eyes as well, and also a probiotic. When I was underweight and couldn't gain back after having my gallbladder out, I needed to take L-glutamine to fix my leaky bowel. Very helpful in just a couple of months. I don't take that anymore. I stopped or cut way back on dairy while I was healing as well because it caused digestive distress. I can tolerate dairy okay now, but use lactose free whenever possible. I take turmeric on food every day. You need to take it with a healthy fat and fresh ground black pepper though. I know it may take a lot to feel better and everybody is a little different. I hope you figure out some things to help you because few doctors have been useful for me at all, but other Celiacs have been helpful

Posted By : k.kgirl - 5/7/2017 9:36 PM
hi i have celiac and am also dairy intolerant and fructose intolerant. I am also anemic but doctors havent done anything for it. im hoping my detention will tell me what i need to do next monday

Posted By : Girlie - 5/20/2017 1:19 AM
My son has Celiac disease. He had anemia - very low ferritin blood levels. It took 9 years for a diagnosis because the Dr. didn't even think about Celiac being a possible cause of low ferritin. - Finally he was tested ...he had very high TTG antibodies. No biopsy done. When he was undiagnosed - he was supplementing with iron, but could not raise the Ferritin much.

Went on a GF diet...and it took over a year for his intestines to heal and the antibodies to drop to a normal range..and his ferritin to come up.

It's now been 15 years since his diagnosis...he gets periodic TTG and Ferritin testing done...and hasn't had an issue. He doesn't need to supplement with iron anymore.

A scope isn't always necessary.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Posted By : Diamond20_UK - 7/20/2017 8:24 AM
I have Pernicious Anaemia had it now quite a few years and i have a B12 jab every 3mths but i always know when i'm due, i go so tied on my legs, then my body starts plus i sleep more but with anaemia folic acid in the body is very important i have to take a tablet daily as it substitutes for many main issues.

Terry smile
Diagnosed with MCTD (Mixed connective tissue disease)

Lupus SLE/SCLE/Secondary Sjogren’s syndrome/Raynaud's phenomenon/Scleroderma
Antiphospholipid Syndrome/Peripheral neuropathy/Muscle Atrophy/COPD/Hypothyroidism
Chronic IBS/Epilepsy/Osteoarthritis (Bipolar-Manic depression-OCD)

Post Edited (Diamond20_UK) : 7/20/2017 8:30:59 AM (GMT-6)

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