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

Don't understand my results, can someone help?

Kerissajane

Recommended Posts

Kerissajane Newbie
Kerissajane
Posted

Hi everyone, 

I have been feeling pretty sick now for about 5 months. Finally my boyfriend made me go see a doctor, which I did. My first doctor did a full blood panel and tested me for h pylori - panel came back normal, negative for h pylori. She then referred me to a GI doctor who ordered a full celiac blood panel. Everything came back normal except for one test - he said the max was a 5, and I scored a 6. He didn't clarify which test it was, but from research I think it's the ttg-igg test? 

He then scheduled me for an endoscopy and colonoscopy. He found inflammation only in the stomach - nonerosive gastritis - and this was the only area he biopsied.  I just got a call today from the doctor who said the biopsy results were normal, and told me to just take anti-acid pills for a few months then see how I feel. 

He never addressed what this meant? So do I have or not have celiac? If I don't, I have already taken anti-acid pills, I don't want to live on them forever... I'm having a hard time accepting that just anti acid pills will make me feel better .. They help with the bloating and sensitive stomach (literally can't put any pressure on my belly) but not the nausea, night fevers, and vomiting. 

Can someone pls help me make sense of my doctor's vague instructions/responses to my testing? 

 

Thank you! 

 

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

Celiac.com Sponsor (A8-M):


Go2GFGirl Newbie
Go2GFGirl
Posted

If they did a full blood panel on you for celiac and one comes out high....you have celiac. There are approximately 7 variations of a code for celiac in the genes. It's passed down from family to family.  My mom has a weakness and so does her mom.  Did he go all the way to the small intestines when the Dr. scoped?  If he didn't then he wouldn't see the damage to the small intestine, since that's where the damage is done.  Being on anti-acids is actually doing you more harm then good....it will seem like you have immediate relief....but it's actually making your stomach produce MORE acid ...which will obviously cause an ulcer. Try pineapple, papaya or papaya enzymes for relief.  Try and go off all gluten for 2 weeks and see how you feel.  It's a lot of trial and error...and unfortunately your average MD is not going to tell you to do that.  So start by changing you diet to Gluten Free for 2 weeks and see what happens.  Also you might for the time being...if you're having acid reflex....cut back on acidic foods like tomatos and hot sauces. If the acid reflex is really bad....drink a Tbsp of Apple Cider Vinegar....the effects are immediate. 

Hope to hear back on your results.

cyclinglady Grand Master
cyclinglady
Posted

I am sorry that this is happening to you.  Your best bet  is to obtain copies of all your lab and biopsy reports and post them here (with ranges).  Someone can interpret them.  We are not doctors, but can help based on our personal experiences with celiac disease and NCGI.  

Meta4icalme Newbie
Meta4icalme
Posted

Kerissajane,

I suggest you contact the Dr and "ask him directly to clarify" whether or not you have Celiac Disease. Or you can call the Gastro's office you saw for your biopsy evaluation and they can answer your question on the phone.

Your Dr is responsible for your medical questions and answers. When he isn't being clear enough then it's your turn to take control of getting him to clarify. Remember he works for you. 

Here's hoping you don't have Celiac Disease and that its just acid upset! Good luck ?

ravenwoodglass Mentor
ravenwoodglass
Posted

Since your doctor didn't do any biopsies of your small intestine there is no way to know if you do or do not have celiac. Do post your test results as we can help interpret them.  If you don't plan on any further testing for celiac you can do a strict trial of the diet. If you are going to want more testing  (second opinion?) don't drop gluten yet.

bartfull Rising Star
bartfull
Posted
1 hour ago, Go2GFGirl said:

If they did a full blood panel on you for celiac and one comes out high....you have celiac. There are approximately 7 variations of a code for celiac in the genes. It's passed down from family to family.  My mom has a weakness and so does her mom.  Did he go all the way to the small intestines when the Dr. scoped?  If he didn't then he wouldn't see the damage to the small intestine, since that's where the damage is done.  Being on anti-acids is actually doing you more harm then good....it will seem like you have immediate relief....but it's actually making your stomach produce MORE acid ...which will obviously cause an ulcer. Try pineapple, papaya or papaya enzymes for relief.  Try and go off all gluten for 2 weeks and see how you feel.  It's a lot of trial and error...and unfortunately your average MD is not going to tell you to do that.  So start by changing you diet to Gluten Free for 2 weeks and see what happens.  Also you might for the time being...if you're having acid reflex....cut back on acidic foods like tomatos and hot sauces. If the acid reflex is really bad....drink a Tbsp of Apple Cider Vinegar....the effects are immediate. 

Hi Go2, and welcome to the forum. I agree about the apple cider vinegar. (Diluted in water of course). A lot of folks with reflux or heartburn think that would be the worst thing they could do but it really helps.

And if the OP decides to try a gluten-free diet instead of going for further testing I wouldn't blame her. But I don't think a two week trial is long enough. Heck, a lot of folks are still dealing with gluten withdrawal two weeks in. I think at least a three MONTH trial would be better.

Hope to hear back on your results.

 

sheelahdog Newbie
sheelahdog
Posted

None of my tests (always incomplete) ever came back positive, but had issues my whole life.  Doctors kept telling me it was this or that - and then that it wasn't this or that but something else.  I tried to go gluten free by eating gluten free processed foods and it was a disaster for me.  My breakthrough came when I went on the specific carbohydrate diet (no grains, starches, sugars, lactose ...) because someone told me it would help my inflammation and pain.  It made a huge difference! My gut was so damaged, it needed time to heal.  The next time I tried a little gluten 6 months later (a pinch of the sacrament bread at church) I ended up throwing up blood.  So after a quick upper scope two doctors told me i was gluten intolerant and never to eat it again.  I never looked back.  I am so glad I kept trying when the doctors didn't know what it was.  I feel so much better!  I figure it doesn't really matter if or when you get an official diagnosis.  Try and find what works and then do that.

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

Celiac.com Sponsor (A8-M):


Go2GFGirl Newbie
Go2GFGirl
Posted
15 hours ago, bartfull said:

And if the OP decides to try a gluten-free diet instead of going for further testing I wouldn't blame her. But I don't think a two week trial is long enough. Heck, a lot of folks are still dealing with gluten withdrawal two weeks in. I think at least a three MONTH trial would be better.

I absolutely agree, 3 months is preferable to 2 weeks....I just know personally from the people in my life who want to go Gluten Free don't have the will power.  I say 2 weeks as a trail because it's just long enough to make a worse reaction when you try to eat gluten after the 2 weeks.  As you said though...3 months ...or forever is much better.  I just know not everyone has the willpower and self-control to resist their favourite gluten filled treats.

As everyone has been mentioning....if you are planning to have more testing or seek a 2nd opinion....don't go off gluten yet.  If you are satisfied with your results and want to make a life change with changing your diet to gluten free and move on....then just go gluten free.  If you are just gluten-intolerant....going gluten free is enough. If you have celiac (as I do personally) ....going off gluten isn't enough. To repair the damage done to the small intestine you need to cut out ALL grains and processed sugars. They cause inflammation and are not healing your small intestine.

 If you have any more questions, feel free to ask....But I would suggest getting clear answers from your Doctor.

Kerissajane Newbie
Kerissajane
Posted
  • Author

I really appreciate everyone's feedback. I might try the apple cider vinegar, I've heard it does actually help. 

I'm traveling and the doctors office wants to charge me to put the results online so I'm going to wait and pick them up for free when j get back from out of town - in about 2 weeks. 

I'll post them then! Starting to wonder if I should also get a second opinion. 

My intuition tells me this is not just a case of gastritis. Two days before my procedure I attended a friend's baby shower and ate cake and all other sorts of gluten containing foods and got very sick - like when you get food poisoning - that woke me up in the middle of the night. I was hovering over the toilet for 2 hours, it was horrible. No one else got sick!! I didn't even eat a lot.. No alcohol, no meats, etc. 

Anyway, ill be back on here with results as soon as I get them! Thanks again

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Mmoc
      - Mmoc replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Blood tests low iGA 4 years later digestive issues

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...
    3. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    4. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    5. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,388
    • Most Online (within 30 mins)
      7,748
    Whirlwind acres
    Newest Member
    Whirlwind acres
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
×
×
  • 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.