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Mateto

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Mateto Enthusiast
Mateto
Posted

Hello everyone,so of you know how I've been having problems getting a proper diagnosis. Today I finally got my blood results back, and they were negative for coeliac disease.

She will not send me for a biopsy, but she said I was gluten intolerant and sensitive. However, I know I have more symptoms than this, and I have diagnosed myself, I suppose you could say, with coeliac. She told me to stop eating gluten, which I've been gradually doing the past few days, and today is my first fully gluten free day! So here I am, excited that within a few months, I might actually feel better for once :lol:

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pricklypear1971 Community Regular
pricklypear1971
Posted

Well, I'm happy if you're happy :).

I dont remember, did you have vitamin deficiency panels run? That maybe the only thing to look at, if it wasn't already.

Im glad you're excited and I wish you much luck,

Mateto Enthusiast
Mateto
Posted
  • Author

Yes I did. I was told I'm anaemic....ANOTHER symptom of coeliac disease the doctor ignored. :P

pricklypear1971 Community Regular
pricklypear1971
Posted

Well, take some iron (I'm assuming you're talking about iron) and make them retest it in 6 months.

IrishHeart Veteran
IrishHeart
Posted

There are several forms of anemia--

B-12 deficiency, Folate deficiency, Iron deficiency.

What exactly did she say??

How much did she say to supplement with?

Mateto Enthusiast
Mateto
Posted
  • Author

My iron was HIGH on the last test....hemaglobin (or whatever) was low. Which doesn't make sense, I was re-tested for that only today, because she said the results were probably wrong. But yet I'm still anaemic.

Anyways I'm not too concerned, because I've been going gradually gluten free the past few todays and today completely. One symptom has stopped! I know it won't be for a few months until feeling completely better, but my only challenge is getting my family members to take this seriously.

I can NOT stress how important cross-contamination is. THEY JUST WON'T UNDERSTAND!

pricklypear1971 Community Regular
pricklypear1971
Posted

You need to get a copy of all your labs. Plus the retest.

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Mateto Enthusiast
Mateto
Posted
  • Author

You need to get a copy of all your labs. Plus the retest.

I think I'd have better luck trying to drown a fish :lol:

My Doctor wouldn't let me see them!

Because of our free healthcare under the MCP/NHS, Private practitioners are few and far between. My Doctor (I feel) is only in it for the money, but she told me that apparently she's "told me everything she can" <_<

She also said my hemaglobin will fix itself eventually. I really don't understand her, she gives me a million different answers. The main thing is: I'm on the road to feeling better :)

pricklypear1971 Community Regular
pricklypear1971
Posted

I think I'd have better luck trying to drown a fish :lol:

My Doctor wouldn't let me see them!

Because of our free healthcare under the MCP/NHS, Private practitioners are few and far between. My Doctor (I feel) is only in it for the money, but she told me that apparently she's "told me everything she can" <_<

She also said my hemaglobin will fix itself eventually. I really don't understand her, she gives me a million different answers. The main thing is: I'm on the road to feeling better :)

There must be a law that forces them to disclose.

Seriously.

Mateto Enthusiast
Mateto
Posted
  • Author

I think so!

She called me today because I had more bloodwork done. Out of an act of kindness, at least she told me my hemaglobin is gone back to normal and so is my iron.

I haven't been gluten-free for very long, but I was when I had these tests, so that might have something to do with it.

This doctor is only filling in for my doctor who is in Australia at the moment, so I won't pursure anything legal yet. My normal doctor is excellent, she knows what she is doing, so I know if I ask her for my records she'll probably give me a copy :D

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    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
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