Upcoming Biopsy And Endoscopy

[AJ-nyc]

Hello Everyone!

I am a newbie here. I am scheduled for an endoscopy/biopsy this coming Tuesday to check for damage to the small intestine. I had three celiac blood tests done a few days ago... Endomysial IgA, Transglutaminese Iga, and Transgltaminese IgG. I told my doctor I wanted a biopsy done regardless of the results of these blood tests, and I told her I was getting too sick eating gluten to wait any longer for the blood tests before doing a biopsy. I know this doctor just wanted to appease me at this point... I visit her about 2x a month or more with complaints.

Should I ask my GI doctor on Tuesday how many biopsies he is going to take? How many should he be taking? I don't want to be a smartie pants, or make him sound incompetent , or insult him before I get put under, because I will be at his mercy once the anesthesia kicks in. How do I tactfully and respectfully indicate that I am fine with him doing up to X number of biopsies since celiac damage can be patchy and I sure don't want him to miss anything. Also, should I ask him before hand if he usually diagnoses celiac based on mild blunting or total wearing away of the villi? These are probably questions I should have asked during the consultation, but I spent most of the consultation convincing him to perform the test, and after he agreed to, I was so relieved that I didn't grill him anymore for fear he would change his mind.

Also... I've been nauseous on and off, but more on than off the last 6 months, and gag easily. Should I ask for mouth spray so that the process is smoother.

It will be interesting when results of my blood work and biopsy come back. I would sure appreciate if any members diagnosed with Celiac or gluten intolerance would like to give me feedback on how closely my symptoms resembled theirs pre-diagnosis...

Nausea daily

Swollen stomach

Cramping, pain in left abdomen

Loud digestion

Feeling full right away after eating small amounts

Weight loss of 20 lbs over 2 months

Throat tight and phlegmy

Migraines

Clumsiness

Weak muscles

Fatigue

Dizzyness

Weakness/Feel like I'm in the body of a 90 yr. old (I'm 33)

Confusion and brain fog

Tingling/numbness in hands, arm, feet

Difficulty speaking clearly (mix up word order in sentences)

Hair loss

Legs feel like jello when walking

low thyroid levels. (TSH level was 0.07) but this "resolved" and returned to normal within a month without meds

dx with Vitamin D deficiancy a month ago and put on 50,000 IU 2x a week (I have always drank milk, soy milk, and ensure...all of

which recently makes me nauseas. My endocrinologist was confused why I would be having a vitamin D defficiency , but he thinks

the deficiency may be due to malabsorption).

dx with secondary hyperparathyroidism 2 months ago (PTH 127) (endocrinologist says this disease is a direct result of vit. D

Deficiency)

have an aunt with Celiac disease, a sister with Chrone's, family history of Autism

--most of these symptoms occured in the last 6 months

Also, I did go on a 3 week period eating gluten free after 2 doctors (during 2 separate visits) laughed at me when I asked them if they thought I might have gluten intolerance or celiac disease. During this time of being gluten free, many of my GI symptoms resolved immediately.

Based on these symptoms, who thinks I should go gluten-free, despite any test results? I've been reading through these boards and have noticed that many members who have such strong symptoms indicating gluten intolerance or celiac actually get negative blood tests and biopsies.

Also, one more question... for those of you became gluten intolerant or developed Celiac as an adult... what "triggered" the problems, or did it happen gradually?

sorry for the long post!

[ravenwoodglass]

I would advise that you go back to the diet after the endo is done. Do ask you doctor to take at least 6 biopsies of various areas. You don't need to wait for the results to go back to the diet. The fact that your GI symptoms improved so quickly gluten-free is a strong indication that you need to be on the diet.

As far as triggers go, my celiac was first triggered in childhood after I was impaled. I was alone and had to free myself and went to a neighbors for help. I was 4 when that happened. It was after that when I developed ataxia, my parents couldn't understand why I was all of a sudden so clumsy and fell a lot and I developed extreme constipation, depression and really bad bone pain. I also develped DH then and the doctors told my Mom that I had poison ivy in my blood stream to explain the 12 months out of a year blisters. Those symptoms stayed pretty consisitent into adulthood. My celiac excaberated greatly after I had my children. It took 10 years of trying before my first and after my second child came 3 years later was when the daily and then eventuallly daily and nightly D set in. It would be another 15 years after that before I was diagnosed.

[AJ-nyc]

I would advise that you go back to the diet after the endo is done. Do ask you doctor to take at least 6 biopsies of various areas. You don't need to wait for the results to go back to the diet. The fact that your GI symptoms improved so quickly gluten-free is a strong indication that you need to be on the diet.

As far as triggers go, my celiac was first triggered in childhood after I was impaled. I was alone and had to free myself and went to a neighbors for help. I was 4 when that happened. It was after that when I developed ataxia, my parents couldn't understand why I was all of a sudden so clumsy and fell a lot and I developed extreme constipation, depression and really bad bone pain. I also develped DH then and the doctors told my Mom that I had poison ivy in my blood stream to explain the 12 months out of a year blisters. Those symptoms stayed pretty consisitent into adulthood. My celiac excaberated greatly after I had my children. It took 10 years of trying before my first and after my second child came 3 years later was when the daily and then eventuallly daily and nightly D set in. It would be another 15 years after that before I was diagnosed.

Ravenwoodglass, wow, I'm glad you were ok after that tramatic childhood incident! Thats quite interesting that having children brought out more intense symptoms for you. Possibly the hormones caused this. In thinking back, my first symptoms started showing up after i donated eggs a a fertility clinic. i underwent hormone injections. the rest of my symptoms dramatically showed up immediately after i stared taking birth controls pills.

quick update... i had my endoscopy today. i asked the doctor how many biopsies he was taking, but he didn't give me an exact number. after the procedure, the nurse showed me a form the doctor had filled out saying that things looked normal afer the endocsopy.

also, i found out the other day that t i am apparently b12 deficient. in addition to being vitamin d deficient. i was initially surprised that i was d deficient, because i had been regularly drinking skim milk, soy milk, and then ensure, even though they made me nauseous. but i am even more surprised that i am b12 deficient because i had been eating a variety of nutrition bars that were fortified with b12, as well as other vitamins and nutrients, and i made sure i ate enough to add up to a 100 percent RDA. after the nutrition bars kept making me feel sick, i bought a gummy vitamin supplement that has 8,3337 percent RDA. turns out my iron levels were fine, but i had been taking an iron supplement for awhile b/c iron has always been a problem for me.

If i am gluten intolerant after all, are there other vitamins i should have looked at that i may no be absorbing ??

[ravenwoodglass]

Ravenwoodglass, wow, I'm glad you were ok after that tramatic childhood incident! Thats quite interesting that having children brought out more intense symptoms for you. Possibly the hormones caused this. In thinking back, my first symptoms started showing up after i donated eggs a a fertility clinic. i underwent hormone injections. the rest of my symptoms dramatically showed up immediately after i stared taking birth controls pills.

quick update... i had my endoscopy today. i asked the doctor how many biopsies he was taking, but he didn't give me an exact number. after the procedure, the nurse showed me a form the doctor had filled out saying that things looked normal afer the endocsopy.

also, i found out the other day that t i am apparently b12 deficient. in addition to being vitamin d deficient. i was initially surprised that i was d deficient, because i had been regularly drinking skim milk, soy milk, and then ensure, even though they made me nauseous. but i am even more surprised that i am b12 deficient because i had been eating a variety of nutrition bars that were fortified with b12, as well as other vitamins and nutrients, and i made sure i ate enough to add up to a 100 percent RDA. after the nutrition bars kept making me feel sick, i bought a gummy vitamin supplement that has 8,3337 percent RDA. turns out my iron levels were fine, but i had been taking an iron supplement for awhile b/c iron has always been a problem for me.

If i am gluten intolerant after all, are there other vitamins i should have looked at that i may no be absorbing ??

The fact that you are B12 deficient even with supplementation is significant. Celiac damage can prevent us absorbing and being able to use the B12 from food or supplements that are swallowed. If your doctor has not suggested B12 shots you should get some sublingual B12 tablets. They dissolve in your mouth and absorbed into the bloodstream through your mucous membranes thus bypassing the damaged gut. I do hope you go gluten free now that your biopsies are done, you don't need to wait for the results.

[AJ-nyc]

The fact that you are B12 deficient even with supplementation is significant. Celiac damage can prevent us absorbing and being able to use the B12 from food or supplements that are swallowed. If your doctor has not suggested B12 shots you should get some sublingual B12 tablets. They dissolve in your mouth and absorbed into the bloodstream through your mucous membranes thus bypassing the damaged gut. I do hope you go gluten free now that your biopsies are done, you don't need to wait for the results.

after the biopsy and endoscopy on tuesday, i went gluten free. I am so happy I don't have to punish my body any more with gluten.

I bought some Jarrow's b12 vegan, gluten free, soy free lozenges, 1,000 mcg. Hopefully I will be able to absorb these.

Something interesting happened when I went for the endoscopy earlier this week. I wasn't supposed to eat after midnight before the test. So I ate up until midnight. My endoscopy was scheduled for 11 am, but at 12:30 I was still in the waiting room. By 11 or so, I was so hungry I started feeling faint and dizzy. That escalated until I started to feel a bit nauseous, then confused, and very weak. It was hard to keep my head up, my body went limp. i kept thinking I was about to pass out. Finally i decided it wasn't safe to just sit there, so i tried tot walk to the receptionist. My legs were like jello, and I was dragging myself, half bent over, then leaning on the counter, kind of gasping for air. I tried to tell them what was wrong, but when I opened my mouth, I couldn't talk. I felt like i was going into shock. The receptionists had to come and support my body and i begged them for water. after a sip i felt a little better but i was still dizzy and faint ... my hands were shaking uncontrollably and i was crying. it was so embarrassing. i tried not to shake, but i couldn't hold my hands still.

does this sound like hypoglycemia? this has actually happened to me many times before, but i always carry something sugary with me wherever i go just in case. i has never been his bad before, but i don't go ha long wihout eating. i have to eat every 1 to 2 hours on a regular basis or i feel dizzy. i had another almost fainting scare again today, but had some hard candy with me. it took an good few hours before i was ok again.

is there a link between celiac/ gluten sensitivity and hypoglycemia? i feel like my body is falling apart, one thing after another.

i looked at some old tests from june, and saw my 'fasting glucose' was 99. The normal range was 70-99, and the impaired range was 100-125. hmm. There was no flag marked, and my dr. didn't say anything about it.

[nora-n]

Daughter was constantly hungry before going gluten-free...and B-12 deficient.

Absorption should improve as the villi heal, and in the beginning it probably will be hard to absorb extra vitamins anyway. One is very deficient in fatty acids. Fat absorption is poor or very poor with celiac.

I had negative tests and biopsies but had lots of those symptoms too, and even needed to double thyroid hormone replacement....

Another thing I wanted to mention to people who may have a negative biopsy, is that if you were on any kind of steroids, this will cause your biopsies to be falsely negative.

nora