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

Could This Be The Answer To My Mysterious Illness

melissa222

Recommended Posts

melissa222 Newbie
melissa222
Posted

Hi, I'm new to this but feel I've had an epiphany. After years of tests and doctor visits, and literally feeling as though I'm on my death bed, I think I've found the answer. I'm waiting for my former pcp to call me back, I've requested a celiac panel. Can someone please tell me exactly what tests to request for blood work? I want to be sure I get the proper labs. I have so many symptoms, even the scaly itchy sores on my scalp I use clobex for, which was deemed "dermatitis". Chronic constipation, bloating... I have been on disability for almost 2 years now for "chronic fatigue syndrome and fibromyalgia". My muscles are in terrible shape. They are constantly in spasm and won't relax, and last November I started having constant fasciculations all over my body. I have had so many tests I know it is not MS, Parkinsons, ALS. The symptoms of Celiac tie everything I've experienced since childhood together! I'm only 33. What turned me to Celiac was my aunt called me the other day to tell me that she started to feel very ill, similar to things I feel, ie fatigue, muscle aches, and cut out gluten and was feeling great after only 72 hours. I've been convinced I have a serious magnesium defiency and take supplements, but I'm dying here! My children have allergies, one has eczema, I can see signs in my family now that Ive read about this condition. I have low ferritin levels and low t3 with normal tsh, so that indicates my blood is not transporting nutrients properly. I want to try gluten free, but first I want these tests! Please if anyone can tell me exactly which tests I need so I can make certain none are left out...I've lost faith in doctors having been through all I have. Thanks for any help!!!

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

Celiac.com Sponsor (A8-M):


JoshB Apprentice
JoshB
Posted

It certainly sounds like celiac disease, but then a lot of things do. That's one of the reasons it's difficult to diagnose.

You should just be able to ask for a "celiac panel"; you really shouldn't have to know anything more. Some people also like to have their genetic "DQ" values determined, as this can help screen out celiac disease and also help you gauge risk for your family members -- If you have one DQ7.5 then your family is probably at less risk than if you have double DQ2.5 for instance. If you're willing to wait a couple months for processing, then 23andme.com can tell you much more for much less cost than your doc's lab as far as genetics goes.

Good luck on finding your answers. Don't go gluten free until your doc says that he's done with testing!

Looking for answers Contributor
Looking for answers
Posted

Regardless of what your tests say, once you're through with them (not before!), try eliminating gluten and see how you feel. Non-Celiac gluten intolerance and bring about many of the same symptoms.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Open Original Shared Link

The above link will explain all the blood tests. Print it out and highlight the test names to take to your dr to make sure they do them all. Some drs will just do one test and call it the "celiac panel". It is better to get all of them to have a sense of what is goign on. Also take a copy to the lab when they draw blood and ask the technicians if they are doing all those tests so that if something didn't get ordered you can call your dr's office and correct it before they do the blood draw (might as well do it all at once). When the test results come back get a copy of them for yourself to see. Some drs don't know how to read them or only read the first line or say you are negative when you have a weak positive. Positive is positive. Keep in mind that you can still be gluten intolerant and test negative for celiac disease. So once your testing is all done trial a good strict gluten-free diet for a few months to see if it helps you.

melissa222 Newbie
melissa222
Posted
  • Author

Wow, thank you all so much for your responses! I am going to make sure I get these tests. I've been through the ringer with doctors misdiagnosing me or blowing me off. I feel confident I am on to something here. Thanks everyone, I'll provide an update once I get the results. :-)

eatmeat4good Enthusiast
eatmeat4good
Posted

I know how excited you must feel.

It was an epiphany for me to find this site too.

You are on to something and don't forget it..just in case the tests come back negative.

You can still be intolerant or Celiac even if you do not test positive.

The tests are unrealiable...not to discourage you from testing...but to have you keep in mind in case you test negative.

I wonder how many test negative and go on to stay sick because they didn't know the tests can be wrong...and often are...

Happy for you! It feels great to finally be close to an answer for mysterious symptoms and illness.

melissa222 Newbie
melissa222
Posted
  • Author

Thanks again! I got the Celiac panel yesterday and showed my Dr the link GlutenFreeMama provided. He said the panel includes those plus iGA. I should know in about a week. He is also measuring my magnesium levels, although I've read magnesium is hard to measure via blood because our blood takes it from our tissues to keep blood levels constant. He didn't agree, maybe he knows better than I. He's the doctor, I've only spent countless hours researching it so what do I know? I'll update you all here when I get the results. As of now, I am already gluten free so I really hope I begin to feel improvement soon. Thanks!

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

Celiac.com Sponsor (A8-M):


melissa222 Newbie
melissa222
Posted
  • Author

Well I received the results already via email so have not seen them personally. Just an email that magnesium and celiac profile is normal. I'm not surprised about the magnesium, I happen to know a blood test for mag deficiency is inaccurate. The tests were through LabCorp, and after hearing not to trust LabCorp results I am not totally discouraged, but I can't help but be more than a little discouraged. I'm going to review the results myself because it may be insufficient labs or miseducation on reading the labs. Anyway, I kind of just want to scream. I guess I'll keep glutening myself and anxiously await my GI appt next week with a doctor who knows his stuff. I just need an answer and this disease is a perfect fit. Even though I was told after the fact that labcorp was highly unreliable I wanted an end to the wait. Uuuggghhh. Just venting I guess. Sorry :(

ravenwoodglass Mentor
ravenwoodglass
Posted

Well I received the results already via email so have not seen them personally. Just an email that magnesium and celiac profile is normal. I'm not surprised about the magnesium, I happen to know a blood test for mag deficiency is inaccurate. The tests were through LabCorp, and after hearing not to trust LabCorp results I am not totally discouraged, but I can't help but be more than a little discouraged. I'm going to review the results myself because it may be insufficient labs or miseducation on reading the labs. Anyway, I kind of just want to scream. I guess I'll keep glutening myself and anxiously await my GI appt next week with a doctor who knows his stuff. I just need an answer and this disease is a perfect fit. Even though I was told after the fact that labcorp was highly unreliable I wanted an end to the wait. Uuuggghhh. Just venting I guess. Sorry :(

If you are going to have a biopsy you shouldn't go gluten free until after you have had the biopsy. Then once that is done you don't have to wait to see the doctor to give the diet a strict try. False negatives are not uncommon. Also there are at times biopsy findings consistent with celiac that doctors don't recognize.

WifeMamaRN2be Newbie
WifeMamaRN2be
Posted

Regardless of what your tests say, once you're through with them (not before!), try eliminating gluten and see how you feel. Non-Celiac gluten intolerance and bring about many of the same symptoms.

Hi Looking For Answers! Sorry to ask you here, (I'm sorry OP!), I don't think I can PM you yet, but I had a question for you. In your signature section you mention adrenal fatigue. Would you mind telling me how you were diagnosed? I am only on my 2nd day gluten-free and still waiting for my panel results, but sooo many of my symptoms go with adrenal fatigue and/or Celiac. Thank you!

: )

WifeMamaRN2be Newbie
WifeMamaRN2be
Posted

Hi, I'm new to this but feel I've had an epiphany. After years of tests and doctor visits, and literally feeling as though I'm on my death bed, I think I've found the answer. I'm waiting for my former pcp to call me back, I've requested a celiac panel. Can someone please tell me exactly what tests to request for blood work? I want to be sure I get the proper labs. I have so many symptoms, even the scaly itchy sores on my scalp I use clobex for, which was deemed "dermatitis". Chronic constipation, bloating... I have been on disability for almost 2 years now for "chronic fatigue syndrome and fibromyalgia". My muscles are in terrible shape. They are constantly in spasm and won't relax, and last November I started having constant fasciculations all over my body. I have had so many tests I know it is not MS, Parkinsons, ALS. The symptoms of Celiac tie everything I've experienced since childhood together! I'm only 33. What turned me to Celiac was my aunt called me the other day to tell me that she started to feel very ill, similar to things I feel, ie fatigue, muscle aches, and cut out gluten and was feeling great after only 72 hours. I've been convinced I have a serious magnesium defiency and take supplements, but I'm dying here! My children have allergies, one has eczema, I can see signs in my family now that Ive read about this condition. I have low ferritin levels and low t3 with normal tsh, so that indicates my blood is not transporting nutrients properly. I want to try gluten free, but first I want these tests! Please if anyone can tell me exactly which tests I need so I can make certain none are left out...I've lost faith in doctors having been through all I have. Thanks for any help!!!

Hi Melissa! I'm sorry you are going through this like the rest of us : ( It really stinks, but if we can get a Celiac DX I think we will feel so much better! I am just as new to this as you are-I only had my Celiac panel done the day before yesterday and I'm waiting on results. You should definitely ask for the full panel and also ask them to do vitamin/mineral/metaboloc panels to see if you are deficient in anything. Let us know what you find out! : )

  • 2 weeks later...
melissa222 Newbie
melissa222
Posted
  • Author

Thanks everyone! I went to a GI Dr yesterday and he ordered Promethius Celiac Plus panel, which includes their gene test. I'm so anxious. I guess I'll know next week. He wants to do an endoscopy but I think I'm going to wait for the results before I schedule it. I stopped eating gluten after my test, I figure if I have intestinal damage it won't heal in a week or two so shouldn't botch endoscopy. If it isn't Celiac he wants to test for heavy metal/toxins...scary thought. Does anyone here know of a Celiac with major muscle issues? I really don't know where to go if this is a dead end. It fits, but I haven't read a story of an actual celiac with muscle involvement. I have read that Celiacs often have magnesium deficiency, and I have read symptoms of a mag deficiency which I relate to, but I've not seen any posts from anyone with actual experience with it similar to mine, if this is in fact a mag deficiency. I'm stressing about it. Any first hand experience would be great. I'll post when I get results next week. Thanks to you all. :)

melissa222 Newbie
melissa222
Posted
  • Author

Hi Melissa! I'm sorry you are going through this like the rest of us : ( It really stinks, but if we can get a Celiac DX I think we will feel so much better! I am just as new to this as you are-I only had my Celiac panel done the day before yesterday and I'm waiting on results. You should definitely ask for the full panel and also ask them to do vitamin/mineral/metaboloc panels to see if you are deficient in anything. Let us know what you find out! : )

Let me know how yours turns out! I'm also a wife, mom, and was accepted into a BSN program but my illness got in the way. I hope this is Celiac so there is some hope for healing vs. a progressive decline in health. Me and my kids are too young for me to be so sick. I was so excited about turning 30, I had no idea that my health would suddenly fail me so soon. Here's to us finding answers and hopefully making the medical community more knowledgable one day. :)

eatmeat4good Enthusiast
eatmeat4good
Posted

Thanks everyone! I went to a GI Dr yesterday and he ordered Promethius Celiac Plus panel, which includes their gene test. I'm so anxious. I guess I'll know next week. He wants to do an endoscopy but I think I'm going to wait for the results before I schedule it. I stopped eating gluten after my test, I figure if I have intestinal damage it won't heal in a week or two so shouldn't botch endoscopy. If it isn't Celiac he wants to test for heavy metal/toxins...scary thought. Does anyone here know of a Celiac with major muscle issues? I really don't know where to go if this is a dead end. It fits, but I haven't read a story of an actual celiac with muscle involvement. I have read that Celiacs often have magnesium deficiency, and I have read symptoms of a mag deficiency which I relate to, but I've not seen any posts from anyone with actual experience with it similar to mine, if this is in fact a mag deficiency. I'm stressing about it. Any first hand experience would be great. I'll post when I get results next week. Thanks to you all. :)

Major muscle issues are definitely a Celiac symptom.

At first I had weakness in the legs.

Then aches, then difficulty contracting my muscles, then they atrophied.

I just couldn't exercise. Taking a walk would make me have to sleep or rest for 2 days to recover.

Of course I was diagnosed with Fibromyalgia.

I lost coordination and bumped into walls and had great difficulty walking any distance.

It was all due to gluten.

When I got off the gluten all the symptoms became less severe then started to fade. My muscle tone slowly increased and it still is increasing. I can say I do not have any of the symptoms of Fibromyalgia anymore, nor do I have muscle pain anymore. At first I could only take short walks or exercise my muscles a little bit. Then it got better and better quite fast. Considering how long I was sick, I think 6 months is pretty good time to get your strength and muscle tone back. I mean just basically walking through the grocery store here...not marathon type of muscle tone, but it is way better than where I started from.

There are a lot of people who describe weakness and fatigue and being misdiagnosed with Fibromyalgia, only to find out that it is gluten. Just wanted to share that.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks everyone! I went to a GI Dr yesterday and he ordered Promethius Celiac Plus panel, which includes their gene test. I'm so anxious. I guess I'll know next week. He wants to do an endoscopy but I think I'm going to wait for the results before I schedule it. I stopped eating gluten after my test, I figure if I have intestinal damage it won't heal in a week or two so shouldn't botch endoscopy. If it isn't Celiac he wants to test for heavy metal/toxins...scary thought. Does anyone here know of a Celiac with major muscle issues? I really don't know where to go if this is a dead end. It fits, but I haven't read a story of an actual celiac with muscle involvement. I have read that Celiacs often have magnesium deficiency, and I have read symptoms of a mag deficiency which I relate to, but I've not seen any posts from anyone with actual experience with it similar to mine, if this is in fact a mag deficiency. I'm stressing about it. Any first hand experience would be great. I'll post when I get results next week. Thanks to you all. :)

If you are going to have an endo DO NOT go gluten free yet. Wait until all testing is finished and then do the diet. You don't have to wait for the results of the endo but you do need to keep eating gluten until the endo is done.

melissa222 Newbie
melissa222
Posted
  • Author

If you are going to have an endo DO NOT go gluten free yet. Wait until all testing is finished and then do the diet. You don't have to wait for the results of the endo but you do need to keep eating gluten until the endo is done.

I know you are right. I'm having an internal struggle with it. Dr and Celiacs keep saying eat gluten until tests are over, my family and body are saying no more gluten!! I'm in a tug of war... But I'm dedicated to this, so I just ate a cheeseburger. Ugh.

Thank you for the response about the muscle issues. It helped. I also found an older thread discussing fasciculations and myoclonic twitches which is exactly what my muscles do, so I found that somewhat comforting as well. I just know this is it. In this two year struggle, scaring myself with all the scary possibilities, I have not been more certain of something than I am now. It has explained so much...even why I've never been able to bite into a popsicle. :-) I can't wait to get this over with, have my children tested, and heal!! I hope...

melissa222 Newbie
melissa222
Posted
  • Author

I just wanted to close out this thread by saying my labs from Prometheus came back with a high positive, as well as I do have the DQ8 gene. Still have endoscopy scheduled for next Tuesday, but it looks like I was right! No thanks to any of the doctors I've seen over the last 2+ years. Also, LabCorp reported the FALSE negative initially, so beware!! Thanks everyone for your advice.

Ollie's Mom Apprentice
Ollie's Mom
Posted

Congrats on getting an answer. Hopefully this puts you on the road to recovery and good health. :)

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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    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

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.