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Yay! Dad Is Finally Seeing The Light!


frenchiemama

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frenchiemama Collaborator

My dad almost certainly has celiac. Not only do I have it, but his first cousin does and I suspect that my grandma does as well (she used to always have to get B12 shots because of fatigue and had severe osteoporosis by the time she was in her early 60's). He has symptoms, and has been to the doctor numerous times for testing and they never found anything.

After I was diagnosed in April I told everyone in the family to get tested. He was living in Spain at the time, but when he got back to the US he made an appt to get an endoscopy. Here's where the denial comes in. He started eating gluten-free or mostly gluten-free right away, about 6-8 weeks before his endoscopy, despite my warnings that it would skew his test results. He kept telling me "I don't feel better yet, so I must not have it". I honestly believe that subconciously or otherwise he was sabotaging his test results on purpose because he didn't want to have celiac disease.

He had the endoscopy done a short time ago, and initially told me that the doc said right away that it was negative. I tried to tell him to please have the bloodwork done as well, because I think there is a distinct possibility that he has it. Well, he wouldn't listen at all because as far as he was concerned he just didn't have it. (This is typical of is very stubborn "I don't want to believe it, so it's not true" general behavior. I love the man but he can be an ass at times)

WELL, yesterday he got a letter from his GI saying that while he didn't find obvious villous atrophy, there were abnormalities in the biopsies that could be mild celiac disease damage and that he recommends the bloodwork as a confirmation! YES!! So dad is going to have it done and is now able to admit that he may have celiac disease.

What a relief. I was so worried that he would just let it go and end up with cancer. Whew!

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ianm Apprentice

My brother has finally started to try a reduced gluten diet and says he feels much better, less fatigue and brain fog, and has lost weight. His wife, who stays healthy and in shape, finally forced him to do it because of how much my health has improved.

I still can't get my dad to do it even though he is really overweight and starting to get some serious health problems as a result. The fact that I was in my mid 30's and having serious health problems and probably dead by 40 doesn't seem to be enough to convince him. Both have the same problems I did, fatigue brain fog, serious weight gain, high blood pressure, blood sugar, etc.

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Rachel--24 Collaborator

Ian...I've been meaning to ask you. Obviously the diet is the best thing thats happened to you..its given you your life back. You don't seem to have struggled with it. Was this an overnight change for you or did you experience some down time first? I realize its only been a couple weeks for me but I get ups and downs. When I read your posts sometimes I wonfer if I'm on the wrong track cuz I don't seem to notice a "dramatic" change yet. I'm definately better than I was when I was eating gluten but I'm not anywhere near saying "I have my life back"....I *can* say I'm working toward that but I get frusterated still. How long did it take you?

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ianm Apprentice

I actually found out when I tried the Atkins diet in January 2004. I did not even know about celiac disease or gluten intolerance and neither did the dozens of doctors I went to either. There is a chapter in the Atkins book and it mentioned wheat as one of the most problematic foods. I started feeling better within a few days but it was a good year before I could say I was healthy. I was so sick that "better" for me is still really sick for someone else. My problems were brain fog, fatigue and weight gain and all of the other problems that go along with being obese. I did not have a lot of gut problems. I was feeling so much better on the Atkins diet and had probably reduced my gluten intake by 95% but was still eating some.

It wasn't until early 2005 that I had a good grip on what the real problem was and went completely gluten-free thanks to this website. I have to watch every bit of food I shovel into my mouth because I gain weight real fast and easy. No starchy carbs at all for me. Yeast and soy can be a problem but only in large quantities. I also have to vigorously exercise everyday or the weight piles back on. Fortunatley I am not super sensitive to gluten and can get by okay if I get nailed with a small dose.

I think you are on the right track and you have to give it more time. I was so sick and probably near death that even just a reduction in gluten was the relief my body needed. As far as sticking to the diet I was so desperate that I was willing to do anything to get better that it has not been a struggle for me. It has really only been in the last 4-5 months that I can really say that I truly have my life back. It requires hyper-vigilance but that is a small price to pay.

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Rachel--24 Collaborator

Ian...thanks for the encouragement. I needed that :)

Back in April I thought I was dying too...I was in really bad shape. I went on the Candida diet..not knowing what else to do. Within a week I was like a new person (like you said..."better" for me yet still sick) but since I wasnt worried about gluten..it was still sneaking in. Now that I'm gluten-free I feel like my body is so much more sensitive and I just go up and down. I had alot of dairy last week after not having it at all for 4 months...and I think it might be causing problems similar to gluten. Oh well...I'm still learning.

Thanks again :)

Frenchiemama...I'm glad you're dad is coming around...hopefully he will be more diligent with the diet now :) .

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ianm Apprentice

I don't think I have any dairy sensitivity issues but if I eat a lot it will get my guts churning. All things in moderation.

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    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
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    • knitty kitty
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    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
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