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14Month Update! Repeat Biopsy Results


designerstubble

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designerstubble Enthusiast

Diagnosed 14 months ago Marsh 3b, scalloped duodenum, hiatus hernia.

Subsequent intolerances to MANY foods.

Severe anaemia, low vit d, major hairloss, severe adrenal fatigue, melasma, night sweats, neuropathy, depression, etc!

Repeat biopsy shows 'essentially NORMAL '

Not sure what they mean by essentially but normal sounds good to me.

I came back on to share this, for those of you out there that worry, fret, get anxious, cry, wonder when it's going to get better... It does happen. I was/am one of those that did all that worrying. I still have a way to go in regaining my former self. If indeed I ever will!! But... Healing DOES happen, it's happening for me on a diet that's severely restricted!

Keep at it! :-) x


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GottaSki Mentor

This is excellent news :D

nvsmom Community Regular

Nice!  ;) Congrats!

cyclinglady Grand Master

Yes, it is great news! Congrats!

livinthelife Apprentice

It's super good news! You're right….it can and does get better!! Great job!

designerstubble Enthusiast

Aw thanks guys. I'm still not where I need to be, but I just thought sometimes it's nice to hear some success. I know when I was diagnosed I looked for any possible success threads! We are all or have been looking for hope that things get better. I just wanted to share, to show that slowly but surely it can be done. It took a lot of green juices and food restrictions! I'm hoping in another year I might even grow some hair back!! Lol. That'd be nice! X

IrishHeart Veteran

Congrats!!

 

and yes, just hang in there...I saw more results in symptom resolution (plus more hair regrowth) after 20 months.

 

Best wishes and stay the course. 


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moosemalibu Collaborator

Wonderful news!!  :D

notme Experienced

fabulous!!!  lolz - i was going to ask about your hair, but you included that :)  i'm at about 3 1/2 years, now, and i am happy to report i have an under layer of 'baby hairs' and it's making my hair so much thicker and more full.  it takes a long time!  but i wasn't expecting it to actually grow back, i was just glad it stopped falling out haha ;) 

BlessedMommy Rising Star

That's wonderful! Great job sticking to the restricted diet, I know that it isn't easy. I'm vegetarian, gluten free, dairy free, and mostly sugar free.

designerstubble Enthusiast

That's wonderful! Great job sticking to the restricted diet, I know that it isn't easy. I'm vegetarian, gluten free, dairy free, and mostly sugar free.

Same as me!! I am also corn free (complete nightmare I must say) and have had avoid other food due to sons allergies such as nuts, legumes. All in all a complete pain the....!!!! Keep at it... 8-)
designerstubble Enthusiast

fabulous!!! lolz - i was going to ask about your hair, but you included that :) i'm at about 3 1/2 years, now, and i am happy to report i have an under layer of 'baby hairs' and it's making my hair so much thicker and more full. it takes a long time! but i wasn't expecting it to actually grow back, i was just glad it stopped falling out haha ;)

Yes, mine seemed to stop when a started vit d... Coincidence?? I don't know tbh. But I still take it just in case !!! I have a few tufts at hairline but would LOVE an all over growth spurt, love my hair to be thicker again... I wait and hope! X

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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