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amanda12

Lab Testing Significance Question

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Great thanks.  I switched doctors because I had poor experiences with mine and I don't see the new one until March 31st so I can talk to him more then about the issue.  In the meantime I can switch to a non NSAID for any pain I may have (hopefully that decreases soon). 

Another question I had that I read about on this forum in some older posts was the headaches and brain fog I have been experiencing over the last few days.  It seems somewhat improved today, but the first few days were rough.  Did anyone else here have headaches and brain fog when first coming off gluten?

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Just now, amanda12 said:

Great thanks.  I switched doctors because I had poor experiences with mine and I don't see the new one until March 31st so I can talk to him more then about the issue.  In the meantime I can switch to a non NSAID for any pain I may have (hopefully that decreases soon). 

Another question I had that I read about on this forum in some older posts was the headaches and brain fog I have been experiencing over the last few days.  It seems somewhat improved today, but the first few days were rough.  Did anyone else here have headaches and brain fog when first coming off gluten?

Yes, it's very common for people to have gluten withdrawals. It can be not too much different than what happens if you drink a pot of coffee a day and then go cold turkey. Some people get very severe withdrawal though. 

I do recommend staying away from things that may irritate your gut (even if they're gluten-free) until you're healed up. I generally recommend avoiding alcohol, NSAIDs, for some grapefruit. Basically make it easy for the gut to recover. 

Sometimes fasting can help you get better faster. Basically what you do is only eat between noon and 8 pm. This way the GI tract gets a break for 16hrs each day, which allows it heal faster. It's not required to fast but for some people that don't see improvement quickly as they'd like,it can help.

 

 

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13 minutes ago, amanda12 said:

Thanks for the advise. I will take that into consideration. How long do you suggest do the fasting for?

Until you start feeling better. I did it for the first couple of weeks after DX. I also will do  either a 24hr fast or 16hr fast (like i said above) if i have a reaction to something to help recover faster. It seems to help me get over an exposure faster. 

The thing is that when your GI tract is all irritated even gluten-free food can irritate your GI tract. Not everyone has that problem though but could be worth trying for a while if you're not feeling better fast enough just going gluten-free.

 

 

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I had obvious gastritis (no. H.plylori) after my repeat endoscopy that did not exist on my first biopsy.   I was diagnosed with Chronic Autoimmune Gastritis (biopsies).  There is no treatment.  Just wait and watch for iron and B-12 deficiencies (supplement/treat when needed) and possibly cancer.  I am sharing this because it is possible to develop more than one autoimmune disorder.  And that you should just be aware of this and not to get boxed into just a celiac disease diagnosis.  And that you might not develop anything else in your lifetime.  

Many members report  Gastritis findings like yours when first diagnosed with celiac disease.  For them, it resolved once they healed on a gluten free diet.  So I would not worry.  Just focus on healing from celiac disease damage.

From non-medical personal experience, I think patients should just receive an general autoimmune diagnosis like, “You have autoimmune disease with an emphasis on the small intestine.”  That leaves room for doctors to monitor other areas of the body.  Like, “We better keep an eye on your thyroid.  Let’s plan on running a thyroid antibodies panel if your thyroid enlarges, you develop thyroiditis symptoms, or your standard thyroid panel goes out of range because celiac disease is commonly linked to autoimmune thyroiditis.”

At this point, focus on the gluten-free diet.  Want to heal faster (no proof, just common sense)?  Avoid processed foods as much as you can and do not eat out until you feel good.   I have only been exposed to gluten when I dined out.  

 

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@cyclinglady

You are actually correct about processed foods. There are studies that show it does cause GI problems and aggravate ones you already have. 

https://www.ncbi.nlm.nih.gov/pubmed/29904158

 

This is a reason why I recommend newly DX'd celiacs start with a meat,veggie and fruit diet. If you go heavy on whole foods that aren't processed in anyway it's easy to avoid gluten and also avoid processed foods that might be irritating and already irritated GI tract.

 

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All,

I was hoping for some advice and input. I met with my new GI doctor today and while he agrees my labs I first posted is a strong indicator of celiac disease that he was very surprised my HLA-B27 was negative. I was doing some research and getting mixed results on how often its positive in Celiac. I haven't been tested for the HLA-DQ2 or DQ8 yet my GI said that would just confuse things. Anyone have some insight on this?

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2 hours ago, amanda12 said:

All,

I was hoping for some advice and input. I met with my new GI doctor today and while he agrees my labs I first posted is a strong indicator of celiac disease that he was very surprised my HLA-B27 was negative. I was doing some research and getting mixed results on how often its positive in Celiac. I haven't been tested for the HLA-DQ2 or DQ8 yet my GI said that would just confuse things. Anyone have some insight on this?

I don't think your GI is very knowledgeable about the genetic testing.  HLA-B27 isn't the best genetic test for celiac disease, it's really a test not specific for celiac disease. HLA-DQ2 and DQ8 are much better, the vast majority of celiacs will have one or both of those genes. 

HLA-B27 is simply not the genetic test that is the standard for diagnosing celiac disease. 

Also, the genetic tests being positive doesn't mean you have celiac disease. The use of these tests is that if you are negative for both HLA-DQ2 and DQ8 then you don't have celiac disease. 

Essentially, if one or both DQ2 or DQ8 are positive it means you could have celiac disease but if both are negative you don't have celiac disease. Considering your biopsies and other labs I really don't see the need for the genetic tests but if you want to know the genetics it's DQ2 & DQ 8 that need to be done. 

 

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Good grief.  You have had a very positive celiac disease blood panel (DGP IgA, TTG IGA and EMA) and small intestinal damage.  It does not get better than that.  Genetic testing helps to rule out celiac disease in unclear cases.  Your case is as good as it gets.  I never had genetic testing.  Why spend the money?  I had one positive on the celiac panel and positive biopsies.  Besides, there are some other uncommon genes that members have reported.  So, if you do not have the standard genes, it could be confusing for some lame GP or GI.  

Please go to the Mayo Clinic, University of Chicago or read my favorite celiac expert Dr. Fasano to help you realize that you have celiac disease. I have no idea why some doctors think it is an awful diagnosis.  It is not.  Easy to heal.  Just a dietary change and not some biologic that my poor niece is on for her Crohn's that can have severe side effects.  

“Strong indicator”.  I can not believe the mincing of words!  Are they just trying to make money off of you?  If you suspect this, report them to the medical board.  (Member @frieze, what do you think?)

Read this about celiac disease and how it presents by Dr. Murray at Mayo.  Your doctors could be perplexed at your negative HLA—027 because that usually indicates ankylosing spondylitis based on symptoms.  But celiac disease is systemic.  You can have joint issues.  You can have Crohn’s and have joint issues.  You can even have more than more autoimmune disorder!  

Share this with your doctors.  

https://www.mdedge.com/rheumatology/article/175219/mixed-topics/new-insight-celiac-disease-what-you-should-know

This is a great presentation  by Dr. Fasano.  It explains celiac disease.  A good thing for a newbie.  

 

Edited by cyclinglady

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Thank you both.  This has just not been a good experience for me so far.  I feel like I have just been bounced around the medical system for the last year to rheumatologists, neurologists and different primary cares.  Each one just making me feel like it was all in my head.  Then fast forward to the last few months where I researched and asked my primary care to test for Celiac after reading that it can cause joint pain, neuropathy and brain fog (my major symptoms).  Then while my TTG IGA and EMA were pending I was told by the first GI that there was almost no way I had Celiac based on my other lab results, lack of GI symptoms and lack of known family history.  Obviously she changed her tune when those labs came back.  So I looked for a new GI doctor, the one I saw yesterday.

 I have then been told by numerous doctors that my results are "Indicate Celiac Disease but are not specific to Celiac Disease".  Each time I leave a doctor I leave feeling more confused and uncertain that I was before.  

My insurance is pretty good so it may cover the genetic testing, but perhaps there is really no point.  I will obviously stick to the gluten free diet and see how I feel. I live in Central Ohio, so if anyone has a recommendation for a good GI doctor, I will see if they are covered under my insurance.  Unless unavoidable I don't want to travel out of state to see a doctor.  

My doctor ordered a few additional labs (iron, vitamin D).  He also reordered the TTG (i'm not really sure why this soon).  I will be having a bone density scan and then he wants to repeat the endoscopy in June.  I am not sure if this is a good plan or not.  

Thanks to all for your support during this time!

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Too soon for a repeat endoscopy.  It takes time to master the diet.  Why are your GI s not following Celiac Centers or GI Association’s recommendations?  

These are just a few:

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

You have patient rights.  It looks like you will need to research and manage your care.  You can refuse treatment.  Each procedure is not without risks.  

You must have super insurance.  I get the feeling they see a cash cow, but I could be wrong.  Does their practice own the local lab or hospital?  

At the very least, they  should follow established guidelines.  

The other tests ok, except for the TTG.  Too soon.    

https://www.beyondceliac.org/research-news/new-celiac-disease-guidelines-emphasize-follow-up-care/

 

Edited by cyclinglady

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7 minutes ago, cyclinglady said:

Too soon for a repeat endoscopy.  It takes time to master the diet.  Why are your GI s not following Celiac Centers or GI Association’s recommendations?  

These are just a few:

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

 

 

I actually printed and took the celiac.org one with me to my appointment. The doctor didnt seem to care to look at it. I read labs and recommendations from the sheet during the appointment. I carry my folder of information and lab results with me each appointment.

I just feel like I can't trust any doctor.  I've tried researching GIs that specialize in Celiac but I am not having much luck.

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Ohio?  Huge opioid market.  Maybe they need more income?  

If they are not willing to work with you, better to shop around.  You can work with a PCP doctor.  I see my GI when things are really off.  Both my doctors follow all the guidelines. 

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My PCP is great, but I dont get the idea he is comfortable managing celiac disease. I do know he have no trouble referring me out. I will keep looking for a doctor and hopefully I will find one that is good. Columbus is a large city, you would think it wouldn't be this hard!

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4 minutes ago, amanda12 said:

My PCP is great, but I dont get the idea he is comfortable managing celiac disease. I do know he have no trouble referring me out. I will keep looking for a doctor and hopefully I will find one that is good. Columbus is a large city, you would think it wouldn't be this hard!

You really don't have to go any further. You have celiac disease, just go gluten-free. If you want an official DX on file then you'd need to see a GI who understands diagnosiing Celiac Disease. Columbus should have several good GI doctors. 

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58 minutes ago, Fenrir said:

You really don't have to go any further. You have celiac disease, just go gluten-free. If you want an official DX on file then you'd need to see a GI who understands diagnosiing Celiac Disease. Columbus should have several good GI doctors. 

I agree that Amanda should probably go gluten free now.  Why suffer?  Time to heal!   She has all the test results in hand.  But it would be nice to have an official diagnosis (maybe she has one from her second GI) and a GI or PCP who will support her (like talking about the papers she has brought in to discuss).  Getting your insurance or doctors to run repeated tests for celiac disease can be problematic without a diagnosis.  Not impossible, but difficult.  In Amanda’s case, her current doctors love running tests even when not necessary (like a TTG within a month of a diagnosis when standard guidelines call for one at 3 or 6 months after the initial diagnosis).    Why?  Because everyone knows that the diet has a steep learning curve.  Mistakes are going to be made.  

I just got a new internist (my old left to be a hospitalist).  Before I walked in the door, he had researched all the necessary tests I should have at an annual exam.  Is he a celiac disease expert?  No, but he was willing to learn.  His two predecessors actually made copies of all my paper work and ordered the follow-up guideline tests I gave them.  (Believe me, I have had plenty of terrible doctors in my lifetime.)   

It sounds like her doctors are not supportive.  If she can, finding one who will support her would be great!  In the meantime, she can heal!

 

P.S.  Maybe it is a female thing.  I know what it is like to have doctors tell you that your symptoms are “all in your head” or that you are peri-menopausal, or that your job is too stressful.  Thank God my husband accompanied me to some of my doctor’s visits and challenged those comments.  

Edited by cyclinglady

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Thanks for the input. I do have an official diagnosis of celiac disease. They gave that to be after the biopsy. They just keep saying its consistent with Celiac but not specific but with my labs they make the diagnosis. This new doctor just didnt seem like he was 100 percent confident. Sounds like based on one lab that isnt even Celiac relevant (Hla-b27).

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2 minutes ago, amanda12 said:

Thanks for the input. I do have an official diagnosis of celiac disease. They gave that to be after the biopsy. They just keep saying its consistent with Celiac but not specific but with my labs they make the diagnosis. This new doctor just didnt seem like he was 100 percent confident. Sounds like based on one lab that isnt even Celiac relevant (Hla-b27).

Great!  Move forward and look forward to healing.  😊

 

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You know, Amanda, your experience is the norm, unfortunately.  Doctors are terrible at diagnosing things they cannot see clearly on a simple x-ray.  I think liability has a lot to do with it.  However, no one has ever been hurt by following a gluten free diet to clinch a diagnosis.  Like many have said, it is not a terrible disease, it is not hard to learn the diet, although the diet is not convenient.  That is the worst thing I could say about it.

Because I had the same experience as you, with really high blood work and severe anemia to boot, my experience with the GI crowd has permanently turned me off of ever having one.  All they want to do is medicate and not find the root cause.  I have never, in 15 years since diagnosis, been to a GI doctor.  Never needed one.  My recovery was slow but consistently upwards and to this date, my gut feels great with zero issues.  I am strict with my diet and that is why I am doing so well.

I have a thyroid doc, who acts as my primary care because that bunch are another story.  I have a rheumatologist who I only see when needed.....which isn’t much.  That’s it.  If I need any testing done, my thyroid doc orders them because I have been seeing her for 35 years and she knows I know what I am doing.  I am the one who educated her on Celiac and she was an eager learner. She now tests anyone who is diagnosed with Hashi’s for Celiac.  Finding a good doc is really hard today.  They have little time so blow off the important stuff they don’t think is important.  It is not essential to have a GI doctor unless you are having additional problems that need looking into.  Learn the diet well and you will be amazed at what goes away just from cutting out gluten.  Make sure your Celiac info comes from reputable medical sources and not some idiot celebrity blog.  Join in this community and you will get all the support you need!  Welcome!  Celebrate that you have found the root cause of your grief. Really....going gluten free is not the end of the world. There isn’t much that can’t be made gluten free and delicious.  🙂

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3 minutes ago, Gemini said:

You know, Amanda, your experience is the norm, unfortunately.  Doctors are terrible at diagnosing things they cannot see clearly on a simple x-ray.  I think liability has a lot to do with it.  However, no one has ever been hurt by following a gluten free diet to clinch a diagnosis.  Like many have said, it is not a terrible disease, it is not hard to learn the diet, although the diet is not convenient.  That is the worst thing I could say about it.

Because I had the same experience as you, with really high blood work and severe anemia to boot, my experience with the GI crowd has permanently turned me off of ever having one.  All they want to do is medicate and not find the root cause.  I have never, in 15 years since diagnosis, been to a GI doctor.  Never needed one.  My recovery was slow but consistently upwards and to this date, my gut feels great with zero issues.  I am strict with my diet and that is why I am doing so well.

I have a thyroid doc, who acts as my primary care because that bunch are another story.  I have a rheumatologist who I only see when needed.....which isn’t much.  That’s it.  If I need any testing done, my thyroid doc orders them because I have been seeing her for 35 years and she knows I know what I am doing.  I am the one who educated her on Celiac and she was an eager learner. She now tests anyone who is diagnosed with Hashi’s for Celiac.  Finding a good doc is really hard today.  They have little time so blow off the important stuff they don’t think is important.  It is not essential to have a GI doctor unless you are having additional problems that need looking into.  Learn the diet well and you will be amazed at what goes away just from cutting out gluten.  Make sure your Celiac info comes from reputable medical sources and not some idiot celebrity blog.  Join in this community and you will get all the support you need!  Welcome!  Celebrate that you have found the root cause of your grief. Really....going gluten free is not the end of the world. There isn’t much that can’t be made gluten free and delicious.  🙂

Thank you I appreciate the kind words. I think they have just gotten into my head that they still dont seem to be certain that it is Celiac even though it's been diagnosed. At this point I can't think of any other auto immune diseases to ask to be tested for. I guess I'm so eager to get better I worry there is something else going on that the doctors are missing. I have no trust in the medical system. After missing out on a lot over the last year due to pain and emotional state, I dont want to miss out on anymore of life!  I know it will just take time to adjust and hopefully I start feeling better soon which will help my attitude toward the whole situation.

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@Gemini

I think in the 15 years since you've been to a GI specialist they've gotten better as far as Celiac Disease goes. Most GI doctors are well aware of the proper diagnosis of celiac disease now, you may still run into an older GI doctor that hasn't been keeping up on their education but try seeing younger ones, they're genereally more well versed in the latest developments in GI Medicine. 

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5 minutes ago, Fenrir said:

@Gemini

I think in the 15 years since you've been to a GI specialist they've gotten better as far as Celiac Disease goes. Most GI doctors are well aware of the proper diagnosis of celiac disease now, you may still run into an older GI doctor that hasn't been keeping up on their education but try seeing younger ones, they're genereally more well versed in the latest developments in GI Medicine. 

Interesting because the two I saw were both younger! One was actually a fellow.

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If people that post here and on my local Celiac FB page are any indication- there are still a lot of MD doctors that don’t have a clue about Celiac.  And some “ alternative” practitioners that don’t either.  

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When I was diagnosed 25 years ago (blood and biopsy) I was told to avoid gluten for 3 months, then I should be fine. “Most people with nontropical sprue can tolerate some gluten,” said this GI doc who is a teacher at MSU, and the senior partner of the now very large GI office I had to return to. My OB/GYN ordered the genetic testing a few years later - I have both genes. The genetic testing was useful when my children came along. My 2 boys have the DQ8 gene and my 2 girls have the DQ2 gene. Their father doesn’t have either gene. My oldest was diagnosed with celiac at 14 months. My youngest daughter has NCGS. 

Three years ago I fell and broke 4 vertebrae and 2 ribs, puncturing a lung.  Prior to the fall I was having trouble with my balance, numbness and exhaustion due to undiagnosed B12/Folate deficiencies. My internist ran several blood tests, but not the tests that correlate with my family history of pernicious anemia and hemochromatosis. 

My weight dropped 30# and I returned to my internists office in August 2019. She insinuated I was “doing this on purpose,” but ordered the B12/Folate tests. She refused iron screening. When the B12/Folate results came in she refused to order injections and insisted I take over the counter supplements. I explained that my stomach couldn’t tolerate vitamins and my issue was malabsorption. She told me I had none of the risk factors for malabsorption - I didn’t have chronic gastritis, celiac or Crohns. I saw her for chronic gastritis and celiac is right in my records. So I switched internists. 
 

I saw a GI who insinuated I had an eating disorder and “a lot going on”. He laughed about hemochromatosis (I’m not menopausal) and my question regarding SIBO (people have too much time on their hands and then waste the doctor’s time with nonsense questions).  So I returned to my first GI and his very large office. I went through an EDG and colonoscopy. The GI only saw me for 2 minutes before I was sedated. He told my husband I had esophagitis and needed to be on a PPI. The GI never looked at my medical records to see that I’ve been taking a PPI since 2007. The biopsy revealed peptic duodenitis. When I called the office to ask questions, the GI called me back announcing none of my problems are GI related - perhaps I had over reactive nerve receptors, so I needed an antidepressant. When I asked if that cured bloody, chronic diarrhea, esophagitis and peptic duodenitis he became angry and blurred out that my original labs for celiac (in 1995) were not conclusive for a celiac diagnosis. He also claimed that I admitted to an eating disorder while under sedation. SERIOUSLY??!!  He didn’t comment on my very high Ferritin and iron, or the granulomatous changes in my liver found on the CT scan. Perhaps an antidepressant would cure that, too??
 

Since then I’ve seen a functional medicine doctor (who has known me and seen my health decline for 3 years).  Blood tests revealed very high thyroid hormones (could explain the liver/ferritin abnormalities), extreme deficiency in vitamin D, malabsorption (stool test), zero microbiome (cannot break down food) and high bad bacteria (SIBO). She ordered a few more tests and we will have a plan of care next week. I’ve returned to the gym and am running again after struggling since March 2017. 
 

Sadly, my sister with celiac, hemochromatosis, NAFLD, chronic pancreatitis and osteopenia has always had these issues with doctors. She saw specialists at the Cleveland Clinic. In fact, one refused to consider a gallbladder problem because she wasn’t “fat enough.”  Her infected gallbladder burst 2 days later. This is the reason for her chronic pancreatitis. My sister is only 45. 
 

The lesson here is do your research, and know your truth. You cannot receive proper care from a doctor that is incapable of listening and caring. Don’t waste one second questioning yourself or trying to discuss with an ignorant practitioner. There is a wealth of knowledge on this forum, and many ideas of what worked for each individual - use what applies to you and your comfort level. Research research research and ask questions if you need clarity. Celiac is not that difficult, and once you heal you will feel like a million bucks.  Feel better soon!

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