Waiting On Biopsy Result From Possible Incompetent Doctor

[cindy lou]

Hi, I am a newbie to the forums but I have read quite a bit about celiac and other digestive conditions for years now. Ever since I was a few months old I had severe digestional issues, slow growth, frequent infections, and colic as a baby for much longer than "normal" (verified in my baby book medical records), but no one suspected food intolerance. After years of being sick (I am 24 now), I wised up and began a gluten free and later dairy free diet which turned my life around.

Unfortunately my condition has worsened despite my gluten free diet (I am careful with reading labels but my fiancee for whom I cook everything eats almost an entirely gluten-based diet so contamination is a problem) and I have dropped to a lower weight (100 lbs 5'7" tall female) than ever before in my life (typical for my slender frame was 115lbs). This is not a dramatic amount of weight, but I look and feel horrible all the time- I often cannot work or get out of bed and exhibit all the signs of celiac and dairy intolerances to be brief. After visiting home recently my family freaked out and said I looked like I was from Darfur and I was clearly wasting away (they are dramatic) and that I HAD to see a Doctor immediately. My family doctor ran general blood tests (not celiac) and found significant malabsorption, iron-deficiency anemia, and vitamin (especially deficiency so she suggested I see a gastroenterologist for celiac testing (I asked her if I fit the profile, otherwise I doubt she knew anything at all about celiac).

I had an endoscopy done a few weeks ago and I am waiting on my biospy results; they did not blood tests at all. I warned the doctor I had been on a gluten-free and DF diet for about 1 1/2 years and asked if the results would be meaningful but he seemed to ignore me and never answer the question. I splurged and ate 1 gigantic piece of carrot cake in its full gluten and dairy glory the day before my procedure... my results showed irritation, "brittleness," and lesions in my esophagus, stomach, and duodenal bulb. I also have a large amount of bile backup in my stomach and "some" flattening visible in my intestines around the bulb area. I am scared and frustrated since the Doctor does not communicate well and has horrible bedside manner- he flat out told me that he does not consider feeling better on a gluten-free diet to be important at all and only tests matter. I think that from my diet I will get an inconclusive biopsy and he'll just want more tests... they'll be no closure and my family already thinks I am making the whole ordeal up (except the weight loss). My fiancee who sees the ridiculous amount I eat and sees me get dreadfully sick on gluten and dairy knows better and tries to stand up for me, but without a "yes" diagnosis my family accuses me of simply not eating or being stubborn about seeing a doctor.

Can anyone help? I am getting more depressed by the day and I feel lost... my saving grace is my fiancee's support and my diet which is keeping me marginally well (still feel sick)

[Guest Doll]

Hi, I am a newbie to the forums but I have read quite a bit about celiac and other digestive conditions for years now. Ever since I was a few months old I had severe digestional issues, slow growth, frequent infections, and colic as a baby for much longer than "normal" (verified in my baby book medical records), but no one suspected food intolerance. After years of being sick (I am 24 now), I wised up and began a gluten free and later dairy free diet which turned my life around.

Unfortunately my condition has worsened despite my gluten free diet (I am careful with reading labels but my fiancee for whom I cook everything eats almost an entirely gluten-based diet so contamination is a problem) and I have dropped to a lower weight (100 lbs 5'7" tall female) than ever before in my life (typical for my slender frame was 115lbs). This is not a dramatic amount of weight, but I look and feel horrible all the time- I often cannot work or get out of bed and exhibit all the signs of celiac and dairy intolerances to be brief. After visiting home recently my family freaked out and said I looked like I was from Darfur and I was clearly wasting away (they are dramatic) and that I HAD to see a Doctor immediately. My family doctor ran general blood tests (not celiac) and found significant malabsorption, iron-deficiency anemia, and vitamin (especially deficiency so she suggested I see a gastroenterologist for celiac testing (I asked her if I fit the profile, otherwise I doubt she knew anything at all about celiac).

I had an endoscopy done a few weeks ago and I am waiting on my biospy results; they did not blood tests at all. I warned the doctor I had been on a gluten-free and DF diet for about 1 1/2 years and asked if the results would be meaningful but he seemed to ignore me and never answer the question. I splurged and ate 1 gigantic piece of carrot cake in its full gluten and dairy glory the day before my procedure... my results showed irritation, "brittleness," and lesions in my esophagus, stomach, and duodenal bulb. I also have a large amount of bile backup in my stomach and "some" flattening visible in my intestines around the bulb area. I am scared and frustrated since the Doctor does not communicate well and has horrible bedside manner- he flat out told me that he does not consider feeling better on a gluten-free diet to be important at all and only tests matter. I think that from my diet I will get an inconclusive biopsy and he'll just want more tests... they'll be no closure and my family already thinks I am making the whole ordeal up (except the weight loss). My fiancee who sees the ridiculous amount I eat and sees me get dreadfully sick on gluten and dairy knows better and tries to stand up for me, but without a "yes" diagnosis my family accuses me of simply not eating or being stubborn about seeing a doctor.

Can anyone help? I am getting more depressed by the day and I feel lost... my saving grace is my fiancee's support and my diet which is keeping me marginally well (still feel sick)

I know you're depressed and sick, so understand that I know how isolated you feel. I've been there. BUT, I don't think you are doing yourself any favors by making generalized statements about "incompetent" doctors without really looking at your situation.

I don't know if you have Celiac or not, but one thing I have to point out is that you yourself said that you are *GETTING WORSE* on the gluten-free diet. That to me is a red flag that you do NOT have Celiac Disease, or you have *another* condition beside it. This is why I stress that people *should not* ever diagnosis themselves unless they have no access to medical care for their condition anyway. It makes it very hard to confirm Celiac at a later date, and you may not get the medical you need for another condition. It sounds like you have some sort of ulcerative (ulcer) condition. If you are having bile backup, perhaps you have a problem with one of your valves (pyloric valve). If that is the case, it was probably present from birth, and excess bile and stomach acids may be getting in and leaking out, causing lessions.

I don't know if this is your problem. You could have something else or multiple things. Regardless, you need to work with your doctor. I can't stress enough that Celiac/gluten is not to blame for everything!!!!!

You should make sure that you are actually gluten-free if you think you may not be. Have your own space to prepare food in the kitchen, avoid eating out, and see a Registered Dietician.

P.S. Do not kiss your fiance if he has eaten anything with gluten!!! Make sure he brushes his teeth first! Luckily, my fiance is really good about this.

[cindy lou]

Doll,

Thanks for your reply. I didn't feel like going into details but if I had it would clear up ambiguities about ulcers- I have already had an upper GI series looking for them as a teen and I was fine. The medical problems are very specific responses to food, medication/vitamins (I was taking a multi B with wheat in it forever this past year before it dawned on me to read the bottle). I agree in general not to self diagnosis, but I cannot wait on having the money for all these tests and doctor visits and continue to be ill just to have some paper proof- I a wished I knew not to go gluten free before I got the tests, but the reality is I feel better on the diet and have no money to spare. When I referred to getting worse it was in regards to being more sensitive to gluten and/or dairy (like the carrot cake or my fiancee's food which I used to lick knives off or sneak a bite) when I go back to it.. that and the fact the family and work stress is at an all-time high level and I do not do well with arguments.

I'll post back when I talk to the doctor and see what he thinks- he suspected celiac and h. pylori bacteria before the tests, so we'll see. Thanks again!

[ravenwoodglass]

Don't give up on doctors, just give up on the one you have. Many doctors in this country are woefully uninformed about celiac, what they are taught about it in classes is incomplete at best. The last poster had some valid points but the most valid in my humble opinion are these,

"You should make sure that you are actually gluten-free if you think you may not be. Have your own space to prepare food in the kitchen, avoid eating out, and see a Registered Dietician.

P.S. Do not kiss your fiance if he has eaten anything with gluten!!! Make sure he brushes his teeth first! "

the bold text is my addition. Also be sure that you are eliminating gluten from your personal care products such as shampoos, conditioners, lotions etc. and also from any craft, home repair or art type products. Perhaps your fiancee may agree to have the home be gluten free for a couple of months to see if that helps. Celiac causes an autoimmune response, especially after gluten is cleared from the system this response may cause an increased severity in symptoms with even a small amount of CC.

You should eliminate all possible sources off CC, eat only fresh unprocessed foods and clear the gluten out of your home in addition to finding a knowledgeable doctor that you can work with to find out if you have other issues going on. Celiac is not the only cause for us to be ill but it sure can contribute to the formation of many other autoimmune problems when it is not addressed.

[kbtoyssni]

When I referred to getting worse it was in regards to being more sensitive to gluten and/or dairy (like the carrot cake or my fiancee's food which I used to lick knives off or sneak a bite) when I go back to it.. that and the fact the family and work stress is at an all-time high level and I do not do well with arguments.

It is pretty common for your reactions to gluten after being gluten-free to get worse. I figured my immune system was so overloaded before that one more bite of gluten didn't do much. Now that the immune system is back to full strength it's able to fight off gluten with a vengeance!

[Guest Doll]

Doll,

Thanks for your reply. I didn't feel like going into details but if I had it would clear up ambiguities about ulcers- I have already had an upper GI series looking for them as a teen and I was fine. The medical problems are very specific responses to food, medication/vitamins (I was taking a multi B with wheat in it forever this past year before it dawned on me to read the bottle). I agree in general not to self diagnosis, but I cannot wait on having the money for all these tests and doctor visits and continue to be ill just to have some paper proof- I a wished I knew not to go gluten free before I got the tests, but the reality is I feel better on the diet and have no money to spare. When I referred to getting worse it was in regards to being more sensitive to gluten and/or dairy (like the carrot cake or my fiancee's food which I used to lick knives off or sneak a bite) when I go back to it.. that and the fact the family and work stress is at an all-time high level and I do not do well with arguments.

I'll post back when I talk to the doctor and see what he thinks- he suspected celiac and h. pylori bacteria before the tests, so we'll see. Thanks again!

Ahhhh....that makes much more sense! If you are getting more sensitive to gluten after you have been off of it for awhile, that is NORMAL for people with Celiac. I am also the same way, as are many of us here. *If* I recall correctly, the reason for this is because you have a decreased level of antibodies circulating with decreased exposure to gluten, so there are less antibodies to "attach" to the gliadin molecule and render it "inactive", so it triggers less of an immune system response. Basically, gluten has a greater chance now of being detected and setting off an immune response.

I hate to harp on you, but you REALLY need to cut out all gluten, and that means not sampling you fiance's food! You'll never get better! Even a TRACE amount of gluten can make you sick for weeks. That means having a bun touch your salad, let alone eating a full piece of cake! I know you probably ate the cake thinking it would help with your biopsy results, but you get my point. You also need to check all sources of potential gluten, including vitamins and even lipstick (you'd be amazed at how much ends up in your mouth). Some people on here chose to use all gluten-free beauty products to make sure nothing gets in their mouth, but this is a personal choice. Gluten is not absorbed through the skin, so you will be fine to use gluten containing lotion, etc. *if* you make sure to always wash your hands with gluten-free soap before you eat or use cutlery. This is what I do, but it is perfectly fine if you chose all gluten-free products to make it easier. I personally just can't give up my MAC or Dermalogica products. It's the one thing I splurge on!

I hope you get your Dx soon! It does sound like Celiac now that you've clarified some things. If this is the case, you should start to feel better soon if you are strict on the diet and *don't cheat*. Celiac needs a gluten-free diet for life. Let me know if your H. Pylori test was positive or if anything else was detected. I'm curious now....

[gfpaperdoll]

Some of us are so sensitive that we cannot live in a "mixed house". If your fiancee is really supportive he will not have any gluten in the house & he will wash his hands upon entering said house & brush teeth. This will get worse once you have children, if you plan to have children, so maybe you two should get this figured out now. I totally think that your main problem is the cross contamination.

You should also be taking a B12 everyday for the rest of your life. Also you need to make sure that you are getting enough carbs & protein everyday. Make sure you eat nuts everyday. I like to have nuts for a protein when I eat fruit.

Whatever stress you have - just get rid of it, you only live once might as well do it right.

Check the recipe thread for my awesome gluten-free carrot cake recipe, also DF

oh yea, find a better doctor...