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

Need advice / direction


Silentbob

Recommended Posts

Silentbob Newbie

Good day, thank you for taking the time to read my post. I've been battling some symptoms for many years and over the past 18 months I figured out via food elimination that my issues are/have been related to food. I've been to many doctors and none of them have done anything or offered any answers. 

My current doctor has recommended that I be tested for Celiac, however having been gluten free for 18 months I am sure the test will come back as a negative but I am not really sure that I have Celiac to begin with as my stomach symptoms are minor compared to what I've read. I believe the test requires a regular diet in order to test for the anti-bodies which I won't have. My doctor knows I've been gluten free so I am not sure if he is aware that I need to consume gluten for the test to work properly. 

I think I need to find a doctor that specializes in food related illnesses but not sure who that is at this point. The specialist I searched for and came up with is 'gastroenterology'

While wheat/gluten does cause some stomach issues, (very minor changes) my problem is related to mood swings, extreme when I eat something with gluten in it. If I even have something that is cross contaminated from say a fryer, I will still feel the symptoms and feel that I am very sensitive. My main concern is while removing gluten from my diet made a night and day difference I've found that Dairy, Grains and Sugars will also cause similar symptoms. I am currently on a Paleo or damn near Paleo diet and feel the best so far but I want to understand what my issue is and have an actual diagnosis. 

My issues are mainly related to Depression Anxiety and Mood Issues

Wheat/Gluten = Severe Depression, one piece of bread leaves me bed ridden for days, complete loss of cognitive functions, severe depression, severe anger and hate related issues. It has gotten worse since I've been gluten free as well, even slight contamination causes some symptoms which are more minor but the same none the less. The symptoms weren't nearly as bad when I consumed gluten daily.

Dairy/Sugar/Caffeine = Anxiety issues, severe at times depending on what I ate. Can get as bad as a panic attack. Loss of cognitive function

Depression and Anxiety medications do not help when I eat those types of foods and when I don't eat them, I don't need the medication either.

I'm currently Paleo, also drink nothing but water.

What type of doctor should I be looking for?

What should I consider testing for other than Celiac, Non-Celiac Gluten Sensitivity and Lyme?

I am really at a loss after seeing several doctors, many blood tests which come back perfectly normal, and aside from this issue I am in excellent health, no medications, no issues, pains, problems. I want a diagnosis.

Appreciate any help or input that you can provide.

Edit: Pro-biotics do not appear to be of any help. I've taken a high quality, 4/5 strain probiotic for over a month and it doesn't help with any accidential ingestion or cross contamination. 
 

 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
1 hour ago, Silentbob said:

Good day, thank you for taking the time to read my post. I've been battling some symptoms for many years and over the past 18 months I figured out via food elimination that my issues are/have been related to food. I've been to many doctors and none of them have done anything or offered any answers. 

My current doctor has recommended that I be tested for Celiac, however having been gluten free for 18 months I am sure the test will come back as a negative but I am not really sure that I have Celiac to begin with as my stomach symptoms are minor compared to what I've read. I believe the test requires a regular diet in order to test for the anti-bodies which I won't have. My doctor knows I've been gluten free so I am not sure if he is aware that I need to consume gluten for the test to work properly. 

I think I need to find a doctor that specializes in food related illnesses but not sure who that is at this point. The specialist I searched for and came up with is 'gastroenterology'

While wheat/gluten does cause some stomach issues, (very minor changes) my problem is related to mood swings, extreme when I eat something with gluten in it. If I even have something that is cross contaminated from say a fryer, I will still feel the symptoms and feel that I am very sensitive. My main concern is while removing gluten from my diet made a night and day difference I've found that Dairy, Grains and Sugars will also cause similar symptoms. I am currently on a Paleo or damn near Paleo diet and feel the best so far but I want to understand what my issue is and have an actual diagnosis. 

My issues are mainly related to Depression Anxiety and Mood Issues

Wheat/Gluten = Severe Depression, one piece of bread leaves me bed ridden for days, complete loss of cognitive functions, severe depression, severe anger and hate related issues. It has gotten worse since I've been gluten free as well, even slight contamination causes some symptoms which are more minor but the same none the less. The symptoms weren't nearly as bad when I consumed gluten daily.

Dairy/Sugar/Caffeine = Anxiety issues, severe at times depending on what I ate. Can get as bad as a panic attack. Loss of cognitive function

Depression and Anxiety medications do not help when I eat those types of foods and when I don't eat them, I don't need the medication either.

I'm currently Paleo, also drink nothing but water.

What type of doctor should I be looking for?

What should I consider testing for other than Celiac, Non-Celiac Gluten Sensitivity and Lyme?

I am really at a loss after seeing several doctors, many blood tests which come back perfectly normal, and aside from this issue I am in excellent health, no medications, no issues, pains, problems. I want a diagnosis.

Appreciate any help or input that you can provide.

Edit: Pro-biotics do not appear to be of any help. I've taken a high quality, 4/5 strain probiotic for over a month and it doesn't help with any accidential ingestion or cross contamination. 
 

 

Um many of us have Neurological issues with gluten, for years I always just had no energy then my symptoms changed and it made me Mr.Hyde mode, I would get looping thoughts unable to move to the next step in a process and it would drive me mad/angry. Years after going gluten free, I have not seen Hyde but exposures now cause fog to lesser degree, motor control loss if I eat enough etc. This disease constantly evolves it seems. Part of the neurological symptoms for many is how it can make absorption of B-vitamins and magnesium difficult leading to symptoms of extreme deficiency of these. Other part like me was gluten ataxia where it caused my immune system to attack my brain and nervous system...while related to celiac it is rare and can be present even without celiac disease. NOTE supplementing can help a ton with symptoms...I got my own regime I swear by and could not live without for the way it helps with anxiety.

Sugar and carbs...this could be neurological chemical issue, a thyroid issue, a microbiome issues, or a autoimmune issue.

On a limb I would say either read up and do a gluten challenge, if your symptoms are almost immediate....perhaps have the doctor observe and document your symptoms in the office?
Open Original Shared Link
Sounds like you would benefit from my ideal diet lol. I eat keto/paleo with more of a emphasis on protein via vegan protein powders and egg whites, nut four/butters, seed meals/butters, leafy greens, avocados etc. I luckily found some great alternatives like califlour foods plant pizza, miracle noodles rice/pasta, Protes Protein chips, coconut wraps, etc. for treats and running a grain free bakery yields to great treats and low carb grain free breads. 

Silentbob Newbie

Thanks, I can't/won't voluntarily consume gluten products, even for testing. If you knew the the severity of the issue you would understand. A hard consumption of gluten takes me down for 7 to 10 days. I'll miss work and cause family issues. The symptom is so severe.... words can't describe and if they could, nobody would believe me. 

I've been to several doctors and nobody seems to have nothing or in my opinion they are either too stupid to be called a doctor or just out right lazy. The medical profession in this country is a joke. 

I eat mainly Whole Foods now and nothing more.

No snacks, no sugars, no peanuts, no dairy, no grains. 

I just don't know who to see next or what to do. I have excellent health insurance but may drop it and save the money. Maybe start seeing a real doctor, functional instead of a drug dealer.

Sometimes I wish I never started the food elimination diet, easier to be stupid than deal with people that don't want to help improve the quality of life.

I had a full allergy panel done, nothing. MRI, Cat Scan also show nothing. I think I have more of an inflammation issues, pressure behind my sinus but again, it is all clear, when I do eat some of those foods the swelling/pressure returns along with the symptoms.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,799
    • Most Online (within 30 mins)
      7,748

    Liss Drisk
    Newest Member
    Liss Drisk
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • RMJ
      The normal ranges can vary for the tissue transglutaminase and gliadin antibody celiac tests because the units aren’t absolute.  Could you please tell us what the normal ranges are for the laboratory used? If her tissue transglutaminase results are 10-fold above the normal range some would diagnose her on that alone.  Endomysial antibody ranges are more standardized, and a titer of 1:5 would usually be normal.  Might that be the normal range and not her result?  Her total immunoglobulin A is normal for her age. (This is tested because if low, then the other IgA tests might not be valid).
    • Samanthaeileen1
      Hello there! New to celiac community, although I have lots of family in it.  My two year old was just diagnosed with celiac disease based on symptoms and bloodwork.  symptoms (swollen belly, stomach hurting, gagging all the time, regular small vomit, fatigue, irritability, bum hurting, etc) she got tests at 18 months and her bloodwork was normal. She just got tested again at 2 1/2  because her symptoms were getting worse and these were her results :   Tissue Transglutaminase Ab, IgA 58.8 Unit/mL (High) Endomysial Antibody IgA Titer 1:5 titer (Abnormal)   Gliadin Antibody IgA < 1.0 Unit/mL Gliadin Antibody IgG 8.5 Unit/mL Immunoglobulin A 66 mg/dL Her regular pediatrician diagnosed her with celiac and told us to put her on the strict gluten free diet and that we wouldn’t do an endoscopy since it was so positive and she is so little (26lbs and two years old). I’m honestly happy with this decision, but my family is saying I should push and get an endoscopy for her. It just seems unnecessary and an endoscopy has its own risks that make me nervous. I’m certain she has celiac especially with it running in mine and my husbands family. We are now thinking of testing ourselves and our 5 year old as well.  anyways what would y’all recommend though? Should we ask for an endoscopy and a GI referral? (We are moving soon in 5 months so I think that’s part of why she didn’t refer us to GI)    
    • olivia11
      This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense.   You are not confusing yourself  you have got it right. Thiamax (TTFD) plus a B-complex, and if you want benfotiamine, the Life Extension formula covers that at ~100 mg.
    • olivia11
      High fiber can definitely cause sudden GI distress especially if it’s a new addition but accidental gluten exposure can feel similar. Keeping a simple food/symptom log and introducing new gluten-free foods one at a time can really help you spot the pattern. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense.
    • xxnonamexx
      sorry a bit confused so I should take my B complex along with Objective Nutrients Thiamax for TTFD but what about a Benfotiamine to take. The Life extensions contains Benfotiamine and Thiamine together or im confusing myself. I am trying to see if I take Thiamax what should I take for Benfotiamine. Thanks EDITING after further research I see ones water soluble ones fat soluble. So I guess 100MG as you suggested of Life Extension contains Benfotiamine and Thiamine Hydrochloride. and the Objective Nutrients Thiamax contains TTFD.     would work for me.
×
×
  • 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.