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Feeling Frustrated

Kathy951

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Kathy951 Newbie
Kathy951
Posted

Hi,

I am so confused and frustrated  I don’t know if I should be on a gluten free diet or not. I have  not been feeling well for a while, bloating, chest pain/pressure, pain in my back radiating around to the right side that wakes me up at night, I have bouts with constipation and then loose stool but not diarrhea ( TMI) and I have joint pain in my fingers hips and feet and just feel tired all the time.  I have been on Nexium 40mg 1xday for about 7 years now and have at times taken it 2xday for several  months because of the chest pain and pressure with pain going up my right neck w/ pain in my ear.  I have been to two ENT and they see no reason for pain in my ear.  This last October my physician wanted me to have a screening colonoscopy because I was past due for one but I told him I wouldn’t do it unless he ordered a upper scope also to see what was going on with my esophagus and stomach.   I did the upper scope first,  the GI doctor said I have inflammation in my esophagus, stomach and small bowel.  The biopsy of  the esophagus  did not show Barrett’s  just inflammation as with the stomach and small bowel. I requested an appt with the GI doctor because the letter I received with the results didn’t address a reason for the inflammation just said there was inflammation. At the follow up  appt he said it could be Celiac but he didn’t know and ordered blood test and wanted me to try a gluten free diet for 3 months and come back for a follow up.

My blood test he ordered came back negative but he  wants  me to try the gluten free diet to see if it made a difference.  The following are the labs results I have had.

IgA Serum  was 130 mg/dl with a reference range of 81-463 mg/dl

Transglutam Ab IgA was   1 U/mL with a reference range of  -  <4 no Antibody Detected

Gliadin Ab IgA was   4 units with a reference range of  - <20 Antibody not detected

Lipase 55 U/L  with a reference range of  -  23-300 U/L

Amylase 54 U/L with a reference range of 30-110 U/L

Metabolic Panel was normal except for:

GFR was 58 mL/Min per 1.73  reference range >60 normal  3 months ago it was 66mL/Min per 1.73

PLT was 427 with a reference range of 130-400 K CUMM

He also order an RUQ Ultrasound and my gallbladder was normal but I do have a possible 1.2cm cyst in my right kidney is what the report says.

I called the office and ask if the biopsy of the small bowel gave a marsh level, they had to call the lab and have them run that it came back as a Marsh level 1,

As I state at the beginning I am so confused if I should be on a gluten free diet, or is there more blood work that I should be asking for? Sorry this is so long and any advice is greatly appreciated!

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cyclinglady Grand Master
cyclinglady
Posted

Well, based on your negative blood tests and a Marsh Stage I, it appears that you do not have celiac disease at this time, but it can develop at any time.  You could ask for a complete panel which are the IGG versions of the TTG and DGP tests.  The EMA test would be good too.   Then for sure you can rule out celiac disease for now.   I am not a doctor though.  Here is some more information about the subject:

Open Original Shared Link

There must be a reason for the inflammation and the Marsh Stage I.  The article states it could be several things.  I would continue to try to figure it out.  In the meantime, going glutn free may very well help you.  You could have a gluten intolerance.  Read our Newbie 101 tips on cross contamination under the "Coping" section of the forum.  Take the diet seriously and give it time.

Oh, the ultrasound catches mostly gallstones.  You could ask for the HIDA scan which checks the gallbladder for functionality.  My ultrasounds were always good.  By the time I had my gallbladder out it was at 0% functionality and was infected.  

 I wish you well!  

Any other questions?  We are here to help!  

 

 

 

deb-rn Contributor
deb-rn
Posted

My initial blood test was negative, but I felt better off gluten, so I diagnosed myself and got on with life.  I didn't need any more convincing after I started to heal.  When you are sick of being sick... it's time to take charge!  I'll never go back to eating gluten.  It's a way of life that's easy to get used to and better for my health in the long run.  Autoimmunity is a broad category and one system affects the next.  My pain decreased a bit when I went gluten-free.  I have Sjogren's too.  All diseases start with the gut... what it lets in and what it excludes.  Letting in large particles (leaky gut) that are seen as invaders, or keeping out the micronutrients needed for optimal health can have an effect on many bodily functions.  Our bodies have the ability to heal themselves, given the right nutrition.  Eating whole, natural food is better for everyone!  Not just the Gluten Sensitive.

 

Debbie

MrsPea Newbie
MrsPea
Posted

I read somewhere that there's no such thing as mild celiac, you either can digest gluten or you can't. Perhaps with Marsh 1 damage you've caught it in time! Why wait for things to get worse?

As for the pain in your ear/neck, do you clench your jaw? Or have tmj? Both of these usually cause me pain in my ear & neck.

I've also suffered from a random episode of vertigo which turned out to be damage to my vestibular nerve. This is usually the result of an upper respiratory infection but I never had that. I had to go to a specialist "dizzy" dr at Mass Eye & Ear to get that diagnosed. 

Hope you get solid answers soon, but it sounds like a gluten-free diet would be best for you. 

 

Kathy951 Newbie
Kathy951
Posted
  • Author

Thanks to  each of you for the tips and information, I have a doctor apt next Thursday, I am going to ask for the additional blood work and telling him I want a HIDA scan ordered.

I have been eating gluten free the last two  weeks I still don't feel the greatest but should I go back to eating gluten for the additional testing?

I am so glad I found this site it is nice to know I have a place to ask questing and get moral support Again thanks for your input I am feeling a little overwhelmed with all this but this is helping me figure out what I have to do.

  • 1 month later...
Kathy951 Newbie
Kathy951
Posted
  • Author

I have decided to do the full blood panel to test for celiac and talked my doctor into ordering it for me (this was no small feat),  I was following a gluten free diet  for about a month before  this decision.  I have been back eating gluten for two weeks now but am wondering  how long should I be eating gluten before doing my blood work? I am not feeling the greatest but want to do it as long as necessary for accurate test results.

 I am so thankful for this forum and everyone's help I think I would be totally lost without you!

 

Irene Joanne Explorer
Irene Joanne
Posted
9 minutes ago, Kathy951 said:

I have decided to do the full blood panel to test for celiac and talked my doctor into ordering it for me (this was no small feat),  I was following a gluten free diet  for about a month before  this decision.  I have been back eating gluten for two weeks now but am wondering  how long should I be eating gluten before doing my blood work? I am not feeling the greatest but want to do it as long as necessary for accurate test results.

 I am so thankful for this forum and everyone's help I think I would be totally lost without you!

 

I've read anywhere from six weeks to 3 months

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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