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New Member Here - Advice Appreciated!

kaka

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kaka Newbie
kaka
Posted

Hi Everyone,

I'm absolutely delighted to have found this board but please bear with me as I'm just learning about this coeliac business. Breifly this is my story: Went to the doctor last October with loads of symptoms (Brain fog,rhinitis etc) and blood samples were taken. Now i'm not sure of the results but I know that one sample showed a very high level of something - think it might be some kind of antibodies. Whatever it was, my level was 33, and the upper level of normal is 10 (are you still with me!!) Doctor suspected that I might be coeliac and arraned for a biopsy. Meanwhile I went on a strict gluten free diet and felt much better.

Anyway I went for a biopsy 2 weeks ago and the results were normal. Doctor doesn't know what to think and now neither do I!!

I was wondering if my strict diet ( For 3 months) could have shown a positive biopsy result? I just feel a bit bewildered - sounds strange but I really would like a 'label' for this

Any advice appeciated

Thanks

kaka

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Rachel--24 Collaborator
Rachel--24
Posted

If you were on a gluten free diet for 3 months the biopsy was useless at that point. Damage would not be visible after a strict gluten free diet. The only way to have a chance of coming back positive on the biopsy would be to go back ON gluten for several months and even then the biopsy is a "hit or miss"....so may still come back negative even if you have Celiac. You should find out exactly what test was taken for Celiac that came back high. Some tests are more specific than others. If it was tTG than its very likely you have Celiac....its the most specific test. If its Anti-Gliadin IgG than that would be the least specific for Celiac. Either way you either have Celiac or gluten intolerance and the treatment is the same....a strict gluten-free diet.

kaka Newbie
kaka
Posted
  • Author

Thanks foryour speedy answer Rachel. I've just phoned my doc and the high level (33)was IGA Tissue Transglutinaminase. Maybe we use different terms here in Scotland(!!) - is that the same as tTG or IgG ??- I'm not sure but any clarification would be much appreciated

Thanks again

kaka

Guest cassidy
Guest cassidy
Posted

Kaka,

My question is, if you have been gluten free for 3 months, have you noticed a difference with your symptoms? If you feel better then that is what is important. My tests came back negative but I feel so much better. In the beginning I wanted "to know for sure" but now I'm just happy that I feel better.

Guest nini
Guest nini
Posted

being on the gluten free diet even for several weeks prior to your biopsy, would still skew the results. Even if there was previously damage to be detected, it may have significantly begun to heal, or they didn't take enough samples and just got an area with no damage.

With your high 33, you do at the very least have a gluten intolerance, which IN MY HUMBLE OPINION is the same thing as Celiac, only difference being that you don't have proven damage to the villi... Either way the gluten free diet is the only treatment AND I would say treat it as Celiac...

I never had the biopsy, never will... I started the diet the day I had my bloodwork drawn. If I had waited one more day I may have been dead... I was that sick... anyway. I'm almost 3 years into this, 100 pounds lighter (YAY ME!) and healthier than I have been my entire life.

You'll get the hang of the diet easily enough and depending on how ill you were before, it may take you a while before you really notice an improvement... it was a good 6 months for me before I really felt much better... still have ongoing stuff from going undiagnosed for so long but that's another story for another day.

chrissy Collaborator
chrissy
Posted

kaka--my girls had tTG levels of 18 and 22, and ? (don't know the other one) the 2 that had biopsies: one was negative and the other was iffy. when i asked the doc about no damage, he said they probably did have damage because of their numbers. since your numbers are alot higher than my girls' , i would guess they just didn't hit the right spots with the biopsy

christine

Rachel--24 Collaborator
Rachel--24
Posted

Kaka,

tTG is actually the same as Tissue Transglutinaminase. Its just alot easier to type. ;)

If yours was positive than you have Celiac.

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kaka Newbie
kaka
Posted
  • Author

Thanks you all so much for your answers. I really do feel so much better gluten free, and strangely think I am beginning to lose weight (fantastic). I think you're all correct in that it doesn't really matter what the biopsy results were and to be honest I wonder why I was bothering so much that the result was inconclusive - I FEEL so much better on the new diet so I'll continue on it.

I think I wanted a 'label' for some sad reason!!

I love this board and will continue to visit to pick up tips etc, we are still in the dark ages about coeliac in Scotland!!

Thanks again

kakaxx

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