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pacificfords Newbie
pacificfords
Posted

Hi. I thought this might be a place to jump in for my first post. I have been reading for almost a week and was unofficially diagnosed (via colonoscopy) for Celiac Disease on the 20th. My doctor ordered the blood test that day and my follow-up for the results is on Feb 3rd.

This past 7 months has been an incredible and frustrating experience. I have been sick for a long time, but they could find nothing wrong. I really didn't know about this disease until this past summer when I was diagnosed with renal failure. In the months to follow I did research on my own and was very certain this was my problem. The doctors didn't take me seriously. Finally, they did the colonoscopy, and sure enough...

I stopped all gluten the day of my doctors appointment (after the blood test). Well... I thought I had. I have learned much since. Three of the medicines I had been taking for months had gluten, as did many of my personal care products. I have a severe itchy rash on my legs that has gone undiagnosed for months, but now I also understand what that is. My hair has been falling out for weeks. I have severe anemia and am in the final stage of renal failure. It is my hope that going gluten free will give me back some of my kidney function. The doctors have been scratching their heads for months trying to figure out why my kidneys are shutting down. They have given me a bit of hope that some of the damage can be repaired because it isn't all permanent.

So... I am learning. I am changing my lifestyle and I am hoping to heal. I am already starting to feel better. I haven't seem my kidney doctor since the new diagnosis so I am kind of excited to do that. It has been months of questions, searching and confusion... that now is very clear.

One of the first threads I saw when I came to this forum (that is burned in my memory) is "What if I ingore this?" Wow... after months of dealing with renal failure and the confusion of the doctors... I can honestly say that to not give credit to this disease as being serious is a big mistake. This disease almost took my life. I am grateful for the information on this site or I might never have found the information and pushed the doctors to test for it. I had almost every single symptom on the list of symtoms and they were trying to diagnose me with several different auto-immune diseases, but they just couldn't pin it down until now, with my help from reading on this site.

I guess I have rambled enough for a first post. :) Looking forward to meeting and getting to know people on the site and learning as much as I can about this disease. ~Debi

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Paula Wallah Newbie
Paula Wallah
Posted

It is such a shame that the doctors more-or-less stood around wringing their hands or scratching their heads in your case. Sadly, that seems to be the case of many Celiac peeps. I'm not bashing doctors, don't get me wrong. It is sites like this one that might, one day, perhaps (fingers crossed) help to educate the educated doctors. I understand that they can be at a loss sometimes, but to give up looking/trying to heal their patients is wrong! Thankly, you found your answers and are improving. I hope this is the case in my life one day soon...to start improving and to get my life back! thank you for posting this....it may well be what someone out there needs to read to find their answers!

IrishHeart Veteran
IrishHeart
Posted

Hi. I thought this might be a place to jump in for my first post. I have been reading for almost a week and was unofficially diagnosed (via colonoscopy) for Celiac Disease on the 20th. My doctor ordered the blood test that day and my follow-up for the results is on Feb 3rd.

This past 7 months has been an incredible and frustrating experience. I have been sick for a long time, but they could find nothing wrong. I really didn't know about this disease until this past summer when I was diagnosed with renal failure. In the months to follow I did research on my own and was very certain this was my problem. The doctors didn't take me seriously. Finally, they did the colonoscopy, and sure enough...

I stopped all gluten the day of my doctors appointment (after the blood test). Well... I thought I had. I have learned much since. Three of the medicines I had been taking for months had gluten, as did many of my personal care products. I have a severe itchy rash on my legs that has gone undiagnosed for months, but now I also understand what that is. My hair has been falling out for weeks. I have severe anemia and am in the final stage of renal failure. It is my hope that going gluten free will give me back some of my kidney function. The doctors have been scratching their heads for months trying to figure out why my kidneys are shutting down. They have given me a bit of hope that some of the damage can be repaired because it isn't all permanent.

So... I am learning. I am changing my lifestyle and I am hoping to heal. I am already starting to feel better. I haven't seem my kidney doctor since the new diagnosis so I am kind of excited to do that. It has been months of questions, searching and confusion... that now is very clear.

One of the first threads I saw when I came to this forum (that is burned in my memory) is "What if I ingore this?" Wow... after months of dealing with renal failure and the confusion of the doctors... I can honestly say that to not give credit to this disease as being serious is a big mistake. This disease almost took my life. I am grateful for the information on this site or I might never have found the information and pushed the doctors to test for it. I had almost every single symptom on the list of symtoms and they were trying to diagnose me with several different auto-immune diseases, but they just couldn't pin it down until now, with my help from reading on this site.

I guess I have rambled enough for a first post. :) Looking forward to meeting and getting to know people on the site and learning as much as I can about this disease. ~Debi

Hi Debi,

I am sorry to hear that you have struggled so long to get the proper diagnosis.

I am new here, too and I have been so sick for several years and in horrible burning pain..tons of debilitating symptoms I won't trouble you with as it sounds like you have had quite a struggle yourself. Doctors were useless and I had to fight for many tests and blood work, even MRIs to find the CAUSE of the pain and illness.So many condescending doctors; so much anguish trying to find out what was wrong with me. The gastro's NP told me it was "just GERD" and gave me drugs, including anti-depressants (which I threw away). I had lost 90 lbs rapidly and most of my hair at this point and I thought I would die before someone figured it out....I was skin and bones and couldn't keep anything in. They said it was hypothyroid, put me on medication, but it made me go "hyper" so they took me off it...I was trembling and unable to sleep more than 2 or 3 hours a night for many months...and I developed anxiety (new for me) ...and on and on....everyone trying to give me drugs, not help me get well. I was determined to find the CAUSE of my problems. I knew in my heart it was celiac.I even went to a Naturopathic Doctor who treated me for a year and said "maybe it's gluten"?? After wandering from specialist to specialist for 3 years and trying,in vain, to get the pain under control with all forms of PT, chiropractic, biofeedback, acupuncture,etc...with NO relief...and spending thousands of dollars ....I returned to my primary care doctor and told him what I believed was wrong with me...and he said OMG, you are right!! Now, this guy has children with celiac and he could not see that what I had...all along. He apologized, but I am having a hard time trusting doctors ever again. I look forward to healing and regaining my health and my life.

I am gluten, soy, diary free and see some improvement in just a month,(no diarrhea is a huge thing:>) but I imagine it will take me some time as I have had poor health for so long. In retrospect, I can see how it all started in 1985 with my gall bladder; DXed with "IBS", "fibromyalgia"...had many miscarriages, etc...sigh...

ah well, that is the past....I keep my eyes on the prize!

I can relate to your frustration, even though our stories are different. And I hope your kidneys function better now as you heal your intestines. I am thinking all good thoughts for you! Ginny

pacificfords Newbie
pacificfords
Posted
  • Author

Ginny, Thanks for sharing your story. It sounds like you have had a long road also. The doctors I have had... well... they seemed to have very little interest in my healing. They simply wanted to medicate me and to maintain my health. I wanted healing. I had to fight and fight, but here I am.

I am curious... I have heard others that say they have given up soy and diary as well. I understand from reading that digestion of dairy can be a problem for some. I don't know if it is for me. I was wondering about the soy? Is that something that people are allergic to as well, or is it just better with Celiac to give it up?

I am looking forward to getting to know people and go down this road to healing together. :)

psawyer Proficient
psawyer
Posted

Some of us have problems with soy, but I am not aware of a direct causative connection.

The sugar in milk is lactose. The enzyme to digest it, lactase, is produced by the villi, so there is a causative relationship between celiac disease and lactose intolerance. Many are able to eat dairy again once the villi heal and are again producing lactase. Others are intolerant to casein, the protein in milk, and must stay dairy-free indefinitely.

pacificfords Newbie
pacificfords
Posted
  • Author

Some of us have problems with soy, but I am not aware of a direct causative connection.

The sugar in milk is lactose. The enzyme to digest it, lactase, is produced by the villi, so there is a causative relationship between celiac disease and lactose intolerance. Many are able to eat dairy again once the villi heal and are again producing lactase. Others are intolerant to casein, the protein in milk, and must stay dairy-free indefinitely.

Thank you. That was very helpful.

IrishHeart Veteran
IrishHeart
Posted

Thank you. That was very helpful.

Debi,

One doctor told me that I had "adrenal fatigue" and to eat more whole grains, more protein--so I changed my diet and increased my whole wheat intake and used soy milk sometimes for 8 months. (that was in 2009) I nearly went insane with illness and neurological symptoms. I thought I was dying. In January 2010, I went to another "progressive doctor" who had me tested for food allergens (IgG tests) and it showed a severe reaction to SOY. That's it. I was so naive then---I said "That's crazy, I don't eat that much soy. I don't like tofu." Ha! Soybean oil is in EVERYTHING from vitamins to mayonnaise to bakery goods....He told me cut SOY out for 3-6 months and do a rotation diet and I would be fine. I followed his instructions to the letter--reading labels and cleaning out my house of SOY anything. Lost more weight---which I could not really afford to do--and after 9 months, I was not fine. Symptoms remained the same. He did not think gluten or dairy was an issue, and so I kept them in my diet, eating these food groups every 4th day as suggested. I felt in my heart this was a mistake, but he insisted "those tests are not wrong". (I have learned that tests can often be wrong! I won't rant on that one right now:>))

I just kept going downhill. Meanwhile, my cousin's wife insisted I had celiac (she has it) and begged me to PLEASE cut out gluten and see if it helps. My husband agreed---saying it made the most sense. Meanwhile, I had lost nearly 3 years of my life to this bizarreness.

That's when I went back to the PC doc and he said "Oh no!...."

He was the one who said to avoid dairy initially because of the villi issue. I keep out the soy "just in case" as many on here say it has been a problem for them as well.

The funny thing is, when talking with another celiac who owns a gluten-free store near me, about how the doctor said I had just an "intolerance to soy", he said "BALONEY! Gluten is always the issue---the soy intolerance is just a side bonus"....arrgh!!

Lots of bad advice from the medical community, both mainstream and alternative---much better advice and input from people like us who "get it" and who have the symptoms we do.

It's only been a month for me and I do feel better,not nearly as "spacey" and in the bathroom every minute-- yet I still have "reactions" all the time, so I am not sure if it just getting the gluten out of me or if there's something else going on. My last blood work makes me look "great" on paper--go figure!

One of the people on here said "give the gluten-free/dairy-free diet six months before worrying about what else may be a problem. Your body needs time to heal."

That makes the most sense to me! So that is what i am doing.

I would be happy to talk with you anytime! Hang in there! Ginny

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