Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Upcoming Biopsy And Endoscopy

AJ-nyc

Recommended Posts

AJ-nyc Newbie
AJ-nyc
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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 Newbie
AJ-nyc
Posted
  • Author
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 Mentor
ravenwoodglass
Posted
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 Newbie
AJ-nyc
Posted
  • Author
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 Rookie
nora-n
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.