• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
gatita

For Those Who Are Self-Diagnosed...

Rate this topic

Recommended Posts

Have any of you been tested for vitamin and other deficiencies? Has insurance covered it?

I'm frustrated and worried as to how, in the long run, I will be able to tell if I still have malabsorption issues.

I'm not self-diagnosed, just under-diagnosed. My doc says I definitely have a gluten intolerance which may be celiac, but we never did the biopsy or full blood work because my basic blood work was neg. Then I responded so dramatically to a test diet and then I had an elevated anti-gliadin IgA, test and a few other suspicious blood factors, but that's all.

I have been gluten-free now for four months, and I react so violently to wheat (also apparently allergic) there's NOOOO going back for a gluten challenge.

The problem is my doc is dragging his heels on referring me to a GI, and I don't think my insurance will even cover nutrient deficiency tests if I'm not diagnosed celiac or something more official-sounding than "probable gluten intolerance" or however he would have to word it.

I'm worried that a year from now I won't know whether my guts are healing, and what nutrients I am still lacking.I am taking calcium and several vitamins now and I strongly suspect I am B2 deficient, but I'm just guessing at all this.

I know a lot folks here talk about going gluten-free and never looking back, but have any of you found a way to get the nutrition tests done? Does it matter to you?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Yes. I had symptoms, and they tested for some vitamin issues. In particular, I ended up being diagnosed (correctly, I believe) with fibromyalgia and restless leg syndrome. I don't remember everything they tested for, but b12, D, and iron were in there, and I was low on iron stores.

My husband had some of his vitamin levels checked as he's had trouble with increasing blood pressure. He was vit D deficient.

I've even had my testosterone levels tested (along with other vitamin levels), due to associated symptoms. Let me tell you it is WAY harder to get testosterone levels tested in a 22-year old female than vitamin levels.

You should ask your doctor about it. There are a number of symptoms common to anemia that would justify testing of some vitamin levels, and heck, there are just some places to live (like the pacific northwest) that justify testing vitamin D levels.

Share this post


Link to post
Share on other sites

I've even had my testosterone levels tested (along with other vitamin levels), due to associated symptoms. Let me tell you it is WAY harder to get testosterone levels tested in a 22-year old female than vitamin levels.

Okay, that gives me some perspective... maybe I just need get more assertive on him! Thanks.

Alas, I live in sunny California, also did not have anemia show in the blood tests I did have, although I did have low protein and lymphocytes, which he didn't think were a big deal.

Share this post


Link to post
Share on other sites

You really need Vit. D, B-12, folate, iron/ferritin, potassium, zinc (and I always include magnesium because it is necessary with the D and zinc for bone formation). Also, you need a full thyroid test. The official diagnosis if you test negative for celiac is non-celiac gluten intolerance (NCGI) which is even recognized as a diagnosis by Dr. Alessio Fasano, the recognized authority in matters celiac.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


Your family doctor can order nutrient tests on his own, and it will usually be covered by insurance, even if there is no clear diagnosis. Some doctors do it routinely as part of the physical. Though, I think my doc said it best: "The result of any nutritional deficiency test is not going to change what we do, since supplementation is not nearly as good as the real thing. I am still going to advise you to eat a healthy diet with lots of vegetables."

Share this post


Link to post
Share on other sites

I had positive celaic blood work, but no endoscopy was done. I was tested for vitamin dificiencies - low in vitamin D and Magnesium. When I had my testing done, my doctor's office gave me a list of all the tests they wanted to run, along with their testing codes. They had me call my insurance company to confirm what would be covered before any testing was done, so that I'd know what I was on the hook for financially. I just called the 1-800 number and ran through the list of codes with the customer service rep - very easy. Some of the tests were pretty expensive, but luckily, most of it was covered.

Share this post


Link to post
Share on other sites

When I was diagnosed I was called asymptomatic because I did not present with any seemingly related issues at the time. BUT as time has worn on I have come to realize that indeed I have symptoms. For example, I did not put it together until after my diagnosis that my miscarriages were most likely caused by celiac. I was involved in an accident five years ago that has left me in serious chronic pain ever since. Now I am realizing that some of this pain may stem from celiac as well - especially muscular pain - and I was diagnosed with fibromyalgia which, again, is more of a symptom that I believe is celiac.

When I ate gluten before diagnosis (and during my gluten challenge which I rather enjoyed as I did not get sick!) I felt absolutely no correlation because nothing happened which has made it difficult when eating out, for example. We eat out rarely but I would be curious to know how many times I have actually been glutened in spite of being very cautious.

Share this post


Link to post
Share on other sites

Good question. My first test was the celiac panel, which came back normal. My doc then referred me to a gastroenterologist, who ran some blood and stool tests but not a full nutritional panel. The results showed that I did not have anemia (in fact, the opposite with higher levels) and did not have malabsorption issues. I do not know the names of these tests, but it sounds like you might request them?

Since I have developed other intolerances (soy, corn, nightshades) I have avoided all supplements, even probiotics, as the vegetable source is most likely corn. And I've avoided dairy for years, but am no longer taking calcium supplements. I do eat a ton of vegetables but not the three pounds of green leafy veggies a day that would provide sufficient calcium. What's a gal to do?

Share this post


Link to post
Share on other sites

I was involved in an accident five years ago that has left me in serious chronic pain ever since. Now I am realizing that some of this pain may stem from celiac as well - especially muscular pain - and I was diagnosed with fibromyalgia which, again, is more of a symptom that I believe is celiac.

When I had my bad accident many years ago, the pain didn't come from the broken bones, it came from all the muscles, tendons, connective tissue in both legs, such that I could barely walk with a walker. Diagnosed "fibromyalgia" - probably should have been diagnosed "celiac" :lol: Thank goodness for an excellent massage therapist who worked on me for years.

Share this post


Link to post
Share on other sites


Ads by Google:


Thanks for all your input... I didn't even think of calling my insurance company, I will get the codes and do that. Doh! (slaps forehead)

My iron levels were tested as part of a complete blood panel, but not the other stuff. My doc has been saying "maybe" I ought to be tested for malabsorption in a little while, but his idea of a "wait and see" time span is wayyy longer than mine. :angry:

Share this post


Link to post
Share on other sites

Don't forget to have your calcium checked. Maybe I mention it too much on here, but it can be important. The consequences of really low calcium were downright scary for me. Little did we know it was due to Celiac...

Share this post


Link to post
Share on other sites

I'm still straddling that fence. Went on the gluten-free diet to feel better (because I'd do anything to feel better!). After two weeks family came into town and then Thanksgiving. Wow. Totally blown away at how much it impacts me now and I never related it to what I was eating. I have anemia and very low on D and calcium. Was low on Bs but was taken off of them in April because the B Rx had raised my levels quite high.

My GI doctor has never communicated with my hematologist and when I called him for my records was told there was no electronic (or physical) record of me!! I don't think he looked for it on the capsule endoscopy. I'm trying to get into see a dietician. It would be nice to have gotten the official dx (diagnosis) but I really can't imagine eating what is poison to my body (and mind) to get one. No one needs to tell me something is DEFINITELY going on between gluten and me!

Before 1960, the way they diagnosed Celiac was to restrict the person to being gluten-free for a few weeks and then reintroduce it. It is unmistakable to me that I am Celiac, gluten-intolerant or whatever anybody wants to call it. It IS.

Still straddling the fence though. Good luck on the journey.

Blessings,

Cali

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,912
    • Total Posts
      943,463
  • Member Statistics

    • Total Members
      67,066
    • Most Online
      3,093

    Newest Member
    JULEZ
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello all! I am new on here, and I was wondering if it worth a look for me to get tested for celiac disease. I've been experiencing severe stomach aches accompanied by issues with loose stool, constant fatigue, lots of infections, worsening of skin on my face, frequent nausea, lots of trouble losing weight. I'm asking because I was feeling better at home from vacation after having a very rough semester at school and I'm not very good at keeping track of what I eat typically, but at home it is mostly vegetables and meat, with the occasional rice thrown in. This morning I had my first bagel in months and was extremely nauseous with severe pains and urges to run to the bathroom.  Do y'all think it is worth a try to get tested for celiac disease or some type of gluten intolerance? I'm so tired of being sick and not knowing why... Thank you <3 
    • LexieA, I agree with Plumbago. The symptom's of low stomach acid and high stomach acid are similar so it is easy to confuse the symptom's of one as the other. Dr. Myatt explains this well in her online article about stomach acid. http://healthbeatnews.com/whats-burning-you/ quoting "But My Symptoms Feel Like Too Much Acid…" Strong stomach acid and pepsin quickly "emulsify" fats and proteins, making them ready for the next step of digestion, passage into the small intestine. When these digestive factors are weak, food remains in the stomach for longer and it begins to ferment. Gas pressure from the fermentation can cause bloating and discomfort and can can also cause the esophageal sphincter to open, allowing stomach contents to "backwash" into the esophagus. Even though weak stomach acid is the central cause of this, even this weak stomach acid, which has no place in the esophagus, will "burn." This burning sensation confuses many people, including doctors, who then "ASSuME" that excess acid is to blame. Too little acid, resulting in slowed digestion, and gas which creates back-pressure into the esophagus is the real cause of almost all "heartburn" and GERD." so  you can see how they can easily be confused for each other. you no doubt are having stomach acid issues but it is because it is too little or too much? Timeline helps us determine which it is. If it happens when we eat something it is already to low to  digest the food we are eating. if eating something cause the heartburn/gerd to improve (especially meat) then your stomach acid is really too high especially if this happens between meals. because eating something will naturally dilute/lower the stomach acid pH. I wrote about my stomach acid being misdiagnosed on my celiac.com posterboy blog. ( have summarized most of what you need to know in this reply but the post is still there if you want to study it more for yourself. if your not taking an antacid now then taking BetaineHCL should improve digestion. If it does then raising your stomach acid by lowering you pH should improve your digestion. study on the best way to take powdered stomach acid before trying this. but I found taking 3 to 4 capsules in the beginning was easier than taking only 1 or 2 in the beginning .. .  until I could back it down to only needing one per meal or now none per meal to aid digestion. which is what we are shooting for.  The place where our body is now producing our stomach acid naturally at a healthy level. if you feel a "warm sensation" in your stomach you have reached a good level. I hope this is helpful. I only know it helped me. *** this is not medical advice but I hope you have as a good experience with it as I did. Usually peopledon't  have a trouble taking BetaineHCL unless they have an ulcer or already taking PPI's which are actually lowering  their stomach acid contributing to a viscous cycle of being locked into taking PPI's long term. if PPIs are taken for more than 6 months they can be almost impossible to stop/quit because of the acid rebound people experience when trying to stop taking them cold turkey and why they recommend stepping back doses by 1/2 gradually so they don't get overwhelmed by the stomach acid your stomach is  able to produce again naturally itself (hopefully). . . if taking betaineHCL jump started your ability to produce stomach acid again. . . if not taking betaineHCL (Powdered Stomach Acid) can replace what the body is missing much like taking a hormone. chris kresser has a good online article on this subject as well. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ he says it well. quoting chris kresser. "If heartburn were caused by too much stomach acid, we’d have a bunch of teenagers popping Rolaids instead of elderly folks. But of course that’s the opposite of what we see." **** this is not medical advice but I hope it is is helpful. posterboy by the grace of God, 2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things".  
    • Lex_ I agree with Ennis_Tx. You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate. Magnesium Citrate are easiest to find. Take it 2/day for the first couple weeks to see how much more energy you have. Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work. If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams. And wake up with enough energy to take on the day. **** this is not medical advice but it really helped my chronic fatigue symptom's. It is good for leg cramps too also known as charley horse's. posterboy,
    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
  • Upcoming Events