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

What To Do Next?

hercules25

Recommended Posts

hercules25 Apprentice
hercules25
Posted

14 years of being ill. I have had every test under the sun on every extremity and organ at least 2 times. I am seeking some similarities or advice or something. LOL

Symptoms (that I can think of) Fatigue, abdominal pains, nausea, neuro problems, random rapid heart beat, eye head aches, vision changed, tired, tired, tired, brain fog, sore muscles, muscles spams and so on. All MRI's negative.

These are my positive test:

ANA SCR ... Positive for SSA AB (Neg for lupus/Sjorden)

Vitamin B 43 H (Range 2.1-21.7)

My Albumin and Globulin were below the level of detection

Protein TOT 24H ... 153 (Range 501-100) range urine test and it was negative

Albumin and All my Globulins came back low, another Doctor said it must of been a lap error and a month later ran it again and they were all normal.

Total Protein.. 2.6 L (Range6.1-7.9)

Saccharomyces Cerevisiae

AB (ASCA) (IGG) 28.5 (This is high but not considered positive)

Saccharomyces Cerevisiae

AB (ASCA) (IGA) 45.3 (Anything over 25 here is positive)

Celiac Test, Colonoscopy (found inflammation where small intestines and colon meet), Endoscopy, Capsule Camera, MRIs, liver test, pancreas, girl organs, ALL Negative. My small intestines look good.My doctors are baffled. I accidentally consumed gluten and 36 hours later I was in the most abdominal pain ever and hanging with the latrine for the next week and a half. Even after I go gluten free my symptoms have gotten better but never totally gone. So I figure maybe I dont have gluten intolerance or it takes much longer to repair. I need direction, help, advice before I loose it.

Awaiting a genetic test result...

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

Celiac.com Sponsor (A8-M):


gluten free overseas Apprentice
gluten free overseas
Posted

Did you ever try entrolab (www.entrolab.com)--they can test for candida/yeast. People with candida have to avoid gluten too. Did you already get tested for that?

I read somewhere that it's possible to be sensitive to gluten even if your intestines aren't damaged.

Well, if gluten makes you feel like junk, maybe just avoid it and see how it goes.

Skylark Collaborator
Skylark
Posted

I don't see celiac bloodwork on your list of tests. Did you get celiac disease tests before you went off gluten? Also, have you had a thyroid panel? That would cause the fatigue, brain fog, and I was getting occasional rapid heartbeat with hypothyroidism.

Celiac can take a while to repair. Fasano says gluten intolerance is pretty quick.

You may have other intolerances like soy, dairy, lectins (high in legumes, nightshades, and grains), or food chemicals like salicylates or amino acids. There are a couple diets to try if you are reasonably certain you're dealing with intolerance and not allergy. I'd consider FAILSAFE Open Original Shared Link or Specific Carbohydrate Diet Open Original Shared Link

I'm thinking SCD for the candida issues, and FAILSAFE because of all of your fog and fatigue. It's hard to tell which might help, or whether you might need some combination of the two. Anyway, there is plenty of reading material and stuff to think about on those websites.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

14 years of being ill. I have had every test under the sun on every extremity and organ at least 2 times. I am seeking some similarities or advice or something. LOL

Symptoms (that I can think of) Fatigue, abdominal pains, nausea, neuro problems, random rapid heart beat, eye head aches, vision changed, tired, tired, tired, brain fog, sore muscles, muscles spams and so on. All MRI's negative.

These are my positive test:

ANA SCR ... Positive for SSA AB (Neg for lupus/Sjorden)

Vitamin B 43 H (Range 2.1-21.7)

My Albumin and Globulin were below the level of detection

Protein TOT 24H ... 153 (Range 501-100) range urine test and it was negative

Albumin and All my Globulins came back low, another Doctor said it must of been a lap error and a month later ran it again and they were all normal.

Total Protein.. 2.6 L (Range6.1-7.9)

Saccharomyces Cerevisiae

AB (ASCA) (IGG) 28.5 (This is high but not considered positive)

Saccharomyces Cerevisiae

AB (ASCA) (IGA) 45.3 (Anything over 25 here is positive)

Celiac Test, Colonoscopy (found inflammation where small intestines and colon meet), Endoscopy, Capsule Camera, MRIs, liver test, pancreas, girl organs, ALL Negative. My small intestines look good.My doctors are baffled. I accidentally consumed gluten and 36 hours later I was in the most abdominal pain ever and hanging with the latrine for the next week and a half. Even after I go gluten free my symptoms have gotten better but never totally gone. So I figure maybe I dont have gluten intolerance or it takes much longer to repair. I need direction, help, advice before I loose it.

Awaiting a genetic test result...

When you mention "Celiac Test" do you mean biopsy or blood work? False negatives are possible on both. Also, if they found inflamation in your lower small intestine, what do they attribute that to? It sounds like you could have some kind of inflamatory bowel disease for sure (maybe made worse by a gluten intolerance?), especially with the positive SSA! Are you seeing a rheumy or gastro (or both)?

I about fell out of my chair when I saw that you have a positive ASCA blood test!! I tested very positive for this as well several years ago, but I don't have Crohn's disease (as far as I know...I am having a scope on friday)! The docs are perplexed about this random ASCA result...makes me think it is somehow related to celiac. I have all of your symptoms as well!

hercules25 Apprentice
hercules25
Posted
  • Author

When you mention "Celiac Test" do you mean biopsy or blood work? False negatives are possible on both. Also, if they found inflamation in your lower small intestine, what do they attribute that to? It sounds like you could have some kind of inflamatory bowel disease for sure (maybe made worse by a gluten intolerance?), especially with the positive SSA! Are you seeing a rheumy or gastro (or both)?

I about fell out of my chair when I saw that you have a positive ASCA blood test!! I tested very positive for this as well several years ago, but I don't have Crohn's disease (as far as I know...I am having a scope on friday)! The docs are perplexed about this random ASCA result...makes me think it is somehow related to celiac. I have all of your symptoms as well!

I had the Celiac Blood test and that came back negative. I should hear about my genetic test tomm. When I swallowed the capsule camera the dr said my small intestines looked good. I should actually say I have had 4 colonoscopies and the first one had inflammation the last 3 did not. My Dr's thought Chrons but now they all say no because they say I dont have enough evidence for Chrons (My white blood cells are always normal and such)

I have had my thyroid checked endless times, all negative. My dr told me that the ASCA is not enough to diagnose someone with Chrons even though it is positive. What is the difference between the drs test and entrolabs test??

Please let me know how your scope goes..

I have a rheum and gastro. In fact I have had many. Rheum says I have nothing related to him. Gastro says no to bowel disease and recommended gluten free if it made me feel better.

I still have no answers just random positive test and feeling sick which is no good considering I am trying to finish college, started a business, and am an Army wife. I dont have time to be sick LOL.

pricklypear1971 Community Regular
pricklypear1971
Posted

You can be gluten intolerant and still be sick as heck, not to mention it can be involved with other chronic diseases.

The Enterolab test can check for DQ1 gene which is related to intolerance.

In short, it's hard to prove gluten intolerance other than by gluten withdrawal and challenge. And yes, it can take a while to heal.

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. Jay Heying
      - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    2. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    3. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    5. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,885
    • Most Online (within 30 mins)
      7,748
    KateFC
    Newest Member
    KateFC
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jay Heying
      Celiac friendly probiotics

      By Jay Heying · Posted

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • 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.