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Posted By : Dana68 - 2/14/2017 11:40 PM
So I seen my new gastro doc today. I have to start eating glutrn again for him to make proper diagnosis. He explained if it was true celiacs I would have to be retested in 6 months to make sure I had diet figured out. But if it was tolerance it would just make me sick with no damage. My pcp has had me on iron for a month which I have been very worried about. I have even asked him to retest my iron level & he refused. His exact words was the only thing wrong with you is you have celiacs disease, ibs & you need to get your nerves under control. Well the gastro doc hit the roof! My father had hemochromatosis & my aunt is currently being treated for it. Gastro said my iron was NOT low & hasn't been low. He just could not believe I've been on iron for a month. So now I have that to worry with! I think it's time to find new pcp.... good thing I stepped on his toes & got in to see gastro because he had no intentions of rechecking iron until march. Some of these docs scare the hell out of me. This is same doc that told me I didn't need to be scoped. I just had a feeling I needed someone more specialized in celiacs. Thank god.

Posted By : straydog - 2/15/2017 8:08 AM
Dana, so glad you got to see the gastro. My daughter has hemochromotosis & has been in treatment for years. Have you been dx'd with it? There are two types of it, in addition to doing lab work for a dx you can also have a dna testing done for it. I carry the gene for it as well. Find a new PCP & no we cannot rely on a drs word as being gospel more often than not.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Dana68 - 2/15/2017 1:33 PM
Yes I do carry the gene for it & I pointed that out to my pcp. I was tested yrs ago when my father passed away from it. ( it turned to cancer) my pcp even retested to see if I carried gene. Guess he couldn't take my word. It just infuriates me that some docs are so careless. No I'm not dxed with it but gastro is furious & had me run new labs. I'm praying 1 month on iron has not put me over limits for iron overload. I have enough problems with out pcp stupid mistakes. I'm sorry to hear your daughter has it. Is she doing well? My aunt has been dealing with it for over 10 yrs now.

Posted By : straydog - 2/16/2017 9:10 AM
Hopefully the month you were on the iron you will be ok. I carry the gene but I do not have the disease. My daughter is now diabetic, dx'd with arthritis at a very young age & some other things. She goes every other month & has a unit of blood taken to keep her iron level down. She was too young when she was dx'd to understand the magnitude of what was happening to her body. She went untreated for years & got pretty sick. Of course now she is older & stays on top of it. She has a wonderful gastro that takes care of her & has for several years. She is restrictive with her diet to avoid anything with iron & of course she avoids anything sweet. The main thing is doing her blood every other month.

Keep us posted on how you are doing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Dana68 - 2/17/2017 9:16 PM
I did not realize there is two types of it. Do you know what her ferritin level was when she was dxed

Posted By : straydog - 2/19/2017 9:46 AM
Dana, it has been so long since she was diagnosed that I do not remember her ferritin level. All of her numbers were way out of normal range which sent a red flag up for her dr. She finally found a great pcp that actually looked at reports & first thing she did was refer her to the gi dr that has been taking care of her for so many years now. She also had porphyeria spelling of that not sure. There are a couple of forms of that to. She had to have a liver biopsy immediately which showed some scarring. Now she has ultrasounds of the liver. So far she is keeping things under control. She can tell if her iron level is going up & her gi would like for her to do the blood monthly but it was too much for her so they settled on every other month.

Even though I carry the gene, I do not have the disease & my iron counts are always within normal range.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Dana68 - 2/19/2017 3:52 PM
Straydog, I got my iron numbers back. Ferritin is 223 range 10-120. Iron saturation is 24.9 range 10.0 - 39.0. Iron binding is 233 282-427. Iron is 58 50-170. Gi says when he does egd & it is positive that would be the cause of my ferritin being high. The problem is 1 bite of gluten & it feels like my colon swells shut, couldn't have bowel movement, feels like everything in me swells. I ate gluten for 2days & ive took 3 off.. I will try next wk.. I'm sick of being sick. Since I'm having such major reactions shouldn't he be able to find it?

Posted By : straydog - 2/20/2017 10:13 AM
I would work with this gi dr & let him sort this all out. It may take him a bit of time to do this so keep at it. Her iron was always off the charts & drs use to ask her what do you do eat nails for breakfast, your iron count is very high. It wasn't until she found a really good pcp that is an internist that treatment began. I am just thankful she has both drs & they know what they are doing.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

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