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Woodric

Questions Regarding Symptoms For A Newbie

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Hello!

I have recently come across the possibility of having Celiac disease. All the forums I have read have given me the feeling of a strong community full of answers and help. I am wondering if any of my past experience are similar to any of yours and if this is the solution to my problem.

Several years ago my problem started with a dull continuous pain in my stomach. It would be accompanied by chronic diarrhea and would not stop until I went to the doctors. I did not know the circumstances that brought on the attacks but once the first account happened others always followed about every 3 months. This continued for a year or so until my problem decided to upgrade itself. One night the dull pain started but grew into a very strong pain over several hours again in my stomach. These attacks would begin to happen every couple of months as well, always lasting 8 to 12 hours and would cause vomiting. The final attack that sent me back to the doctors kept me up until 6am, if I had made it past 6 I would have called an ambulance but luckily I passed out. The doctor gave me several test but found nothing in the direction she was looking which was just general.

On the side of this I have had several other issues with my health. Since my late teens I have had patches of dry skin that would show up on my elbows, wrist, stomach, and thighs. I went to the doctors for these and they denoted this a just dry skin and not any sort of fungus. Another issue is that I have been diagnosed with major depression. Yet another problem I have struggled with is when I was hungry I lost any patience I had and would become extremely angry at anything. I asked the doctor about this and he said "Why are you letting yourself get hungry?". As though I was only another teen trying to be to skinny.

At the end of April 07 my system decided it had enough and had what I refer to as a melt down. I felt nauseous, had diarrhea and stomach pains. After a few days of this a visited the doctor and they attributed it to a virus. By the end of the week and still having the same issues I went to an urgent care and was told the same thing. After a month of this continuing I went into the heavy testing mode. I have had an upper and lower GI, an endoscopy, and my gallbladder tested with no result. In my CAT scan they found a narrowing in my small bowel but did not think it was causing the pain. The narrowing was about 5 inches and at first they thought it to be SMA syndrome.

Over this time I have switched doctors and have not had a steady person with me through it all as maybe this would have helped. I have recently graduated College and have lost my insurance for the time being so I can not be tested when I get my new insurance because of preexisting condition clauses and what not. My step mother brought up Celiac's as a possibility and I am at my last end so I will try anything. I thought there is no way this could be it because during the first month of my melt down all I ate was bread and butter! But for the past month or more now I have lived gluten-free as best as I can. I believe I have felt better but still have not gone a whole week without my imodium. As I looked deeper in the disease I saw that most of my other health issues matched with the disease, the skin problem, the mood, and anger. I wonder now why the doctors never thought this as an option.

So I ask, is this similar to anyone or am I on the wrong track? I understand there are tons of different symptoms, but it would make me feel better if I knew that the diet took a while to completely work itself out or if there will just always be bad days.

Thank you for your help!

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I am so sorry to hear you are going through such pain. The hunger, diarrhea, irritability, dry skin and dull stomach pain are all symptoms that we share (I have celiac and was diagnosed 6 months ago). I don't know if you have celiac or not, but the endoscopy would be the best way to tell as far as I am told. You may consider taking your results to another doctor that has experience diagnosing the disease (Alessio Fasano in MD is a good one) so you can be sure one way or another. I can tell you that if you do have it, you won't necessarily feel better right away, especially if you have had a good amount of damage done to your intestine. I am still not healed after 6 months, though I do feel better and better. I'm not sure if this was helpful, but I wish you the best. There's nothing worse then not knowing how to make yourself feel better.

So I ask, is this similar to anyone or am I on the wrong track? I understand there are tons of different symptoms, but it would make me feel better if I knew that the diet took a while to completely work itself out or if there will just always be bad days.

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Welcome Woodric,

As you most likely know, Celiac can have over 200 symptoms. One of which is a genetic tendency. I rather suspect that you have family history of digestive issues. What you have certainly has a cause and perhaps it may be gluten related.

The most valid test for Celiac or gluten sensitivity is the diet. Complete and total gluten free diet for several weeks could be the diagnoses that you may be looking for. Note I said complete and total. It is not that difficult. A "naked" diet consists of meat, eggs, fish, potatoes, rice, fresh veggies and fruit and no processed food can be done easily.

Careful consideration should be made in the kitchen for cross contamination with wooded spoons, shared toasters, chopping blocks and scratch non-stick pots and pans.

Once diagnosed or self-diagnosed, it can take several weeks to several years with complete diligence to feel healed. And it sure feels good when you get there.

It is easy to have a full celiac blood panel for a diagnoses, but you mentioned that you preferred not having a pre-existing condition with regards to your forthcoming insurance. Another thing that you may want to consider is bacteria overgrowth.

I, nor any of us can tell you that you have Celiac. Take a walk around this site and see if you fit in.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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That you are already feeling better since starting the diet is a very good sign. I'd try to tighten up the "as best I can" by reading posts on this forum and asking questions. It is best to be as strict as possible.

Also, it just takes a lot of patience. If you are celiac, realize that you have damage that will take awhile to restore. 1-2 years for adults for the intestines to heal. So we just can't expect miracles with the symptoms, but rejoice when we do get miracles like some do!


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Hi Woodric, I'm new to the board as of today and although I have not suffered too many bouts with the extreme pain that you describe, many of your symptoms are ringing bells. I have had the dull constant pain in my 'gut' for years! Can even remember having it as a child. I am a type one diabetic and also have depression problems. The diabetes and the depression are very well controlled with medication and exercise. Because of the diabetes, I am accustomed to following a restricted diet so dealing with gluten free foods should not pose huge barriers for me, although I do love my low-carb toast with peanut butter and cracked wheat cereal for breakfast.

Technically, I have not been officially diagnosed but have been going through testing for stomach pain, nausea, cramping, bloating, constipation and gassiness...all things that I have seen listed here on this website. I also have problems with hip/low back pain, joint pain/arthritis and carpel tunnel. Again, all things I have seen listed here. Originally I was testing for gallbladder problems but the ultrasound came back with that looking good. They did however, discover that I have two spleens. Gosh, I feel so special! God loved me enough to give me two! :P (Not exactly sure what I did with just the one, but I must be twice as good with two, right?)

Anyway, the long and????long of it is that I have had a CAT scan to check out the spleen problem and then the Dr. has suggested that we pursue other testing to rule out Sprue/Gluten intolerance or gastritis. Well I can tell you that after a very long history with Dr's, while I respect them, I hate tests. (I work for a Dr. so this is rather amusing.) So I have been following a gluten free diet since last Thursday and I already feel much improved. There is still some discomfort, but I am at the point where I want to know as much as I can about this and follow the diet on my own without having to do a bunch of testing and just see what happens.

Just wondering if this is a wise course of action on my part? Also, I have started taking Prilosec to see if that would help with the pain and nausea. Is this a problem?

Hope you figure things out and that we are both feeling much better soon. Honestly, not knowing what the problem is and having medical professionals treat you like your a nutcase or a hypochondriac is so frustrating and certainly no help for a problem with depression. Self-doubt is the worst part of this whole thing so I am really ready for some straight forward answers.

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I think that many of us long for straight-forward answers. Those who get a clear celiac diagnosis via biopsy have no doubts. Biopsy, positive blood results plus clear dietary response are unmistakable. The problem is, many of us don't fit in that picture for one reason or another.

Without testing, clear dietary response and resolution of symptoms is also pretty clear. That takes awhile though.

Then there are those of us who have some positive response but other things worsen, or some positive response but do not totally become free of symptoms. We do keep longing for the straight-forward answer, but have found it is often a lot of detective work and trial and error. That's why this forum has been so important, a sharing of ideas of what has helped.

Keep reading here and asking your questions.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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