Frustrated/Have Questions

bdsmith63 · Joined: 27 Dec 2005 Posts: 22 Location: Kentucky

I've been reading your comments on many of you who are newly diagnosed. I was diagnosed just a few days ago and have begun yesterday evening with a "Gluten-Free" diet. I have been reading TONS of things and I guess overall am frustrated because my story is different.

I am 42 yrs old, in great health, no other health conditions, in fact have a hard time keeping weight off, and the only symptons I've really experienced in the past 2 yrs or so is excessive bloating, gas, and constipation. I have acid reflux of course and band-aid this with the different meds from my GP. I went to a gastro-doc and had the biopsy and then the complete Celiac blood test and confirmed positive.

The doctor wants me on a gluten-free diet for 6 weeks, he will do another blood test and feels he will find the antibodies lowered or perhaps gone from avoiding gluten.

I have just been frustrated becuase I've been pretty much moving along with hardly any major symptons are complications and then such a diagnosis and major life in my eating habits. I have never felt sick or ill from eating wheat, but have read that it's AFTER you eliminate gluten from your diet that you could be come ill after ingesting some into you system.

I appreciate anyone's support and help in this forum. I'm looking forward to becoming involved and hopefully sharing the information that I can offer as the weeks, months, and days progress.

Brian

aklap · Joined: 02 Oct 2004 Posts: 8604 Location: WI, USA

Hi Brian,

Welcome to the board! Glad you're reading as much as you can.

No question about it...Silent CD is probably the hardest (and possibly most dangerous). You have no way of knowing you are maintaining your diet since you have little to no symptoms. I have a friend that is the same. He has no immediate (or delayed) reaction. The only way he knows is thru blood tests. Which I'm not sure he keeps up with. I do worry about him as I don't know how strict he is.

Since you have no symptoms, you have "no incentive" for staying GF. Please don't take that the wrong way...I simply mean it may be easier to stay on a GF diet if you know/experience the negative effects of ingesting it. Kinda like aversion therapy - If bad things happen when you do X - you won't do X anymore. Wink

I wish you well in your GF Journey!! Don't be a stranger Smile

We'll help any way we can!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

rmonroes · Joined: 19 Dec 2005 Posts: 5 Location: Worcester, MA

I just went back to my endocrinologist who had referred me to my GI doc. I asked to have my antibody test repeated now that it's been about 2 months on the GF diet. He said there was no point in doing it, b/c people with higher antibodies than I have had negative biopsies and thus no CD, so there's no point in looking at antibodies in general b/c they are not very informative. I still wanted to know if MINE had gone down, indicating that my body is feeling happier and less allergic. But, he did not want to order the test. What gives? Al, any ideas?

For Brian, just diagnosed 2 days ago....I wanted to say that constipation, gas, bloating...those ARE reasons to go on the GF diet and stay on the GF diet. I'd call those symptoms, wouldn't you? You may be shocked at how much easier your digestive system becomes once you are GF for a while. Constipation is no fun, right? Why not consider this a symptom that will be better on a GF diet? My guess would be that b/c you did not have diarrhea your body was able to get some/most nutrients from the food you ate before elimination, thus not giving you weight loss symptoms. My guess is that you will feel better, even though you did not recognize anything feeling too wrong. Sometimes, it's a subtle slide into bad health, but when you start the GF diet I bet you feel much less troubled by the symptoms you mentioned.

I think it's the diarrhea that was making me so fatigued and sick in general. Not to be gross but I cannot even believe how easy my GI system has become. I always thought I just had a very sensitive stomach. No longer! I have a stomach of steel! I used to know every bathroom in every store, restaurant, mall, highway...you name it! Now, I can wait til I get home! What a concept! Laughing

aklap · Joined: 02 Oct 2004 Posts: 8604 Location: WI, USA

M.Shackelford · Guest

I am glad that you found out what the problem is even if it has been 15 years. I got very sick as a infant and almost died. My parents were told that I did not have true celiac disease and that I would outgrow it. In my teen years I ate anything I wanted. I had many digestive problems over the years. The GI Doctor knew of my history but never biopsied me. I developed Type I diabetes at 31. border line anemia, Osteoperosis, Colitis and had two seizures. I was tested for Lupus, Sjogren's and other auto-immune diseases. I had severe joint pain in several joints. My endocrinologist suggested I seek psychiatric help. I knew it was a physical problem and I kept pressing on. See "overwhelmed" forum. I have had this for years and years and it was not diagnosed properly until 2 years ago. You are now on the right track now. Please just keep pressing on and be much encouraged! You will have down days but you will also have days of feeling better. I am sorry that you have had to suffer with alot of wrong information as I have had to but now things can and will improve for you. It will just take time. You have a support system here with people going through what you are going through. I hope that you have family members to encourage you too and to pray for you. I sympathize with you about being frustrated but now you have the opportunity to be of help and encouragement to others. I hope this helped!

aklap · Joined: 02 Oct 2004 Posts: 8604 Location: WI, USA

Noatak · Joined: 13 Nov 2005 Posts: 492 Location: Massachusetts

Hello Brian,
I know it's probably very hard right now to find a reason to follow this lifestyle (GF) when you don't think you feel so bad but you don't realize how insidious symptoms can be until you follow the diet and realize your stomach problems totally go away. I got really sick this year from CD with all the classic symptoms but had stomach problems off and on all my life. Doctor's could never figure it out until I did the research and demanded the bloodwork.

Now I have been GF as best as I can manage since April and have no more stomach problems and it's amazing! However, I did ingest some over New Year's but don't get violently ill from doing that....my intestines were crampy 2 days later and I felt very tired. Won't do that again....it wasn't done on purpose but once you go GF, you'll never go back. You'll forget you have a stomach because all those little problems will probably go away and you won't realize how bad it was until it's gone! There is good food to be had so not to worry!

By the way, I didn't have the biopsy as my symptoms and history were so
blatantly obvious for it but the bloodwork (Ttg testing) came back pegged for Celiac's. Now that I've been pretty much GF, there is no way in hell I'm eating gluten on purpose for any test just to keep the doctor happy!
I haven't been for any follow up testing either as I feel 100% better now
and I have to pay for the testing myself.....it gets expensive. I was treated badly by the medical profession for years over this and yes, I do have a bit of a chip on my shoulder about it. I was paying them and I figured it out? Shocked

Just follow the diet as it's a healthy one anyway and you don't want the problems you could have from NOT following it! Good luck and stay tuned here as you'll learn much and get some good food advice too!

Rebecca......still interested in meeting up? I've been busy over the holidays but now life is back to it's normal routine and it would be fun to meet a fellow Celiac! I'm trying to figure a place that's good for us both.
I live a few miles from Rte. 290 and Worcester is about a 15-20 minute drive for me. Any idea's?

mo-mo · Joined: 18 Dec 2005 Posts: 6 Location: cincinnati,oh

Hi Brian!
I was diagnosed a little over a month ago, and had NO CLUE that I was not "healthy". All of a sudden, they are telling me that I can't eat anything with glutens... what's a gluten!?! I was so overwhelmed and scared and freaked that I almost thought I couldn't do it. Especially since I am a manager of a pizza restaurant. I was in a pretty good sized funk for about 2.5 weeks. It is a lot easier now. I am learning how to cook gf, and learning what to look for on lables. I am scared, though, because I too have heard that once you are healed, thats when you notice if you eat it. I don't really know what to expect, but I figure if all of these people on here can do it, so can I!!!! Where in Kentucky are you? I am in Cincinnati, and would love to have someone nearby to comiserate with! I hope things are going better since you posted...I think of each day as a victory!!! Good luck and take care of yourself!

MJM · Joined: 26 Dec 2005 Posts: 7

I am also recently diagnosed. Does anyone else feel like they are becoming more gluten sensitive now that they are on the GF diet? I am pretty sure I felt some effects from a contaminated MW container last night. It wasn't horrible but I've only been GF for about a month. I am starting to think that I am going to have to make even more changes to my life! Well it is worth it. I feel better than I have my whole adult life!

aklap · Joined: 02 Oct 2004 Posts: 8604 Location: WI, USA