Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Help!

feedjake92

Recommended Posts

feedjake92 Rookie
feedjake92
Posted

Hmm...not sure where to start.... I guess I will start with my son. About 5 years ago I started researching answers for my son's behavior problems. He was found to have ADHD, gluten and casein intolerances as well as allergies to other foods. He has been on a gluten free casein free diet for about 5 years, and we are still learning.

I have basically been on his diet in order to keep him on it, but I do cheat much more often than he does. I did notice some improvement in my sinus problems and some bowel changes when I started eating the Gluten-free Casein-free diet. I also noticed that I seem to have problems with certain foods such as severe stomach pains with eggs and broccoli and oatmeal constipates me. Since Christmas I have eaten more things more frequently that are not Gluten-free Casein-free. I have become increasingly tired. I ache all the time especially in the mornings. My back muscles stay extremely tight to spite buying a new mattress. I have a rash on the back of my neck that won't go away and have been getting sores in my mouth. My mouth got real bad last week, my tongue felt 3 times its normal size making it difficult to pronouce words. My GI track was a mess from my mouth on down. I can't say I really have diarrhea but mostly constipation with occassional loose stools. Anyway I finally went to the doctor about my mouth which was almost healed by the time I got the appointment. He did a CBC which was off. He said I may be deficient in folic acid and vitamin B12 and said to take vitamins and come back to have the blood tests again in 3 months. Since my appointment I have noticed tiny blister like bumps on my knees (only a few) that itch. (I can't see the rash on my neck so not sure what it looks like.) Also, over the past who knows how long, I can't seem to think straight, my brain seems to be in a fog all the time, and for a long time I have been fighting depression.

Ok, for the questions. I am wondering that with my son's problems might I have had undiagnosed celiac disease? If I take vitamins for 3 months, whether or not I keep eating gluten, will that mask any deficiencies that are there due to malabsorption? I feel that from what I eat, I should not be deficient in either B12 or folic acid. Should I take the vitamins, wait three months and see what happens or ask the doctor to do the blood tests for celiac disease or refer me to a gastroenterologist?

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

Talk to your doctor about the changes the diet has made for you. It sounds like you went gluten-free, then started eating some again, and your body is now throwing a fit at you because it doesn't like gluten! Since your son is gluten-intolerant, he most likely inherited it from someone: you! Taking vitamins will not mask the symptoms of celiac. Being gluten-free will make the tests come back a false negative, unless you do the Enterolab tests. I wouldn't wait three months. Three months is a long time to not feel well.

Guest jhmom
Guest jhmom
Posted

HI feedjake92,

I would make an apt to see either your Gastro or Family doc as soon as possible and talk to them about the symptoms you are experiencing. I sugget making a list of your symptom, making notes of when they started and how long they last. Also keep a food diary or everything you eat, that way it will give your doctor a much broader view of your health problems.

Good luck to you and God Bless

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,963
    • Most Online (within 30 mins)
      7,748
    Pat Martin
    Newest Member
    Pat Martin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Newly diagnosed, struggling

      By Wheatwacked · Posted

      Hello @CeliacNew, If you are Vegan to help you feel better, reconsider returning to omnivore.  Actually, since you are already on a very restrictive diet, transitioning to gluten free might be easier for you.  Read the ingredient labels, Particularly vitamin D and Choline require supplements for vegan diet because our primary source is sun, eggs and beef.  B12 also.
    • Wheatwacked
      Multiple symptoms and mixed provider responses

      By Wheatwacked · Posted

      Once you've completed testing and still don't have improvement, start a trial gluten free diet.  Looking for imprvement that may indicate Non Celiac Gluten Sensitivity, which is 10 times more prevalent than Celiac Disease. Deficiencies in vitamins B6, B12, D, and C can manifest as skin rashes.  Virtual guaranty you are deficient in vitamin D.
    • cameo674
      Help vetting HLA-DQ typing provider

      By cameo674 · Posted

      So those rs numbers tell researchers where the dbSNP is located in a Genome so that other reasearchers or an AI system can look in that specific spot for that Snip of information.  You can look those rs # s by pasting the numbers after rs into the lookup on this page https://www.ncbi.nlm.nih.gov/snp/ right under the Blue header bar at the top of the webpage.  Since you are not a researcher, I do not know how this will help you though.
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      So I posted here once before, and everyone advocated that I get into a GI doc.  I finally got into my functional health appointment on 6/16 to get my blood results evaluated and get the Gastro referral. I was told that I would be fortunate to see a gastro doctor by December, because of the number of people waiting to get in, but they did believe that I needed to see a GI doc among others.  Well, the stars aligned. I got home. I looked at MyChart and it showed an appointment available for later that same day. I never clicked so fast on an appointment time. The gastro doc ran some additional blood work based off the December values that had confirmed my daughter's suspicion that I have undiagnosed stomach issues.  Gastro has also scheduled me to get an upper endoscopy as well as a colonoscopy since it has been 8 years since my last one. She said it would rule out other concerns if I did not show Celiac per the biopsies.  Those biopsies will not occur until August 29th and like everyone here stated, Gastro wants me to keep gluten in my diet exactly as everyone suggested. To be honest, I was barely eating any gluten since I figured I would have plenty of time to do so before testing.  Doc is also looking for the cause of the low level heartburn that I have had for 30 years.  I have mentioned the heartburn to PCPs in the past and they always said take a tums or other OTC drug.  The upper endoscopy is for ruling out eosinphilic esophagitis, h. pylori, and to biopsy the duodenal bulb and second portion to confirm or exclude celiac. The colonoscopy will have random biopsies to rule out microscopic colitis. I didn't really catch her reasoning for the bloodwork.  Doc looked at the December numbers and said they were definitely concerning for Celiac.  She also said, “Hmm that’s odd; usually it’s the reverse”, but I did not catch which result made her say that. She seems very through.  She also asked why I had never bothered to see a GI before.  To be honest, I told her I just assumed that the heartburn and loose stool were a part of aging.  I have been gassy since I was born and thought constantly passing gas was normal?  Everyone I know with Celiac have horrible symptoms that cannot be attributed to other things.  They are in a lot of stomach pain.  I do not go through that.  I attribute my issues to the lactose intolerance that comes with aging, but have slowly been eliminating foods from my diet due to the heartburn or due my assumption that they did not agree with a medication that I was prescribed. I have already eliminated milk products especially high fat ones like ice cream; fats like peanut butter; acids like citrus and tomatoes; chocolate in all forms; and breads more because it is so hard to get in 100 grams of protein if I eat any foods that are not a protein.  I would not have even done the testing if my daughter had not brought up the fact that she thought I might have an undiagnosed condition since she has issues with bloating and another sibling has periodic undiagnosed stomach pain that GI docs throw pills at instead of helping.  Who knew that Bristol scale 5 and 6 were not considered normal especially multiple times a day? I watched my MIL go through basically the same bowel changes starting at 50 so to be honest, I really did think it was normal before this week's appointment.   December 2024's blood tests ran through Quest Labs were:  Deamidated Gliadin (IgA) 53.8 U/mL Above range >15.0 U/mL; Deamidated Gliadin (IgG) >250.0 U/mL Above Range >15.0 U/mL; Tissue Transglutaminase (IgA) 44.0 U/mL Above range >15.0 U/mL; Tissue Transglutaminase (IgG) <1.0 In range <15.0; Immunoglobulin A (IgA) 274 mg/dL In range 47-310 mg/dL 6/16/25 bloodwork:  Until today, I did not really know what all the four tubes of blood were for and since I did not understand the results, I got into the clinical notes to see what was ordered, but it did not exactly explain why for everything. Immunoglobulins IGG, IGA, IGM all came back in range:  IGG 1,010 mg/dL In range 600-1,714; IgA 261 mg/dL In range 66-433 mg/dL; IGM 189 mg/dL In range 45-281.  How do these numbers help with diagnosis? Google says she checked these to see if I have an ongoing infection? I do have Hashimoto's and she did say once you have one autoimmune disease others seem to follow. Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies? Comprehensive Metabolic Panel: Everything was in the middle of the normal range.  Google says this just says I am metabolically healthy. Tissue Transglutaminase ABS test results – Done by the Mayo Clinic’s Labs –  T-Transglutaminase IGA AB --Value: 3.1 U/mL – Normal Value is <4.0 (negative) U/mL; Tissue Transglutaminase, IgG -- Value: 15.3 U/mL High -- Normal Value is <6.0 (Negative) U/mL – Interpretation Positive (>9.0) – These are the only labs the GI did that have been labeled Abnormal.  I am confused at how/why these came back different than the December labs? Because these numbers seem to be the opposite of what the were in December and I know I have eaten less gluten.  They were definitely measured differently and had different ranges. This must be why she said they are usually opposite? Molecular Stool Parasite Panel said I was Negative for Giardia Lamblia by PCR; Entamoeba Histolytica by PCR and Cryptosporidium Parvum/Hominis by PCR.  So at least I do not need to do a parasite cleanse like everyone on TikTok seems to be doing. So I guess, I am just really asking why the Tissue Transglutaminase numbers are different.  Was it because they were truly different tests? Is it because I have not consumed the crazy amount of gluten one is suppose to eat prior to testing? To be honest, I thought that was only for the biopsy testing. I generally only eat twice a day, and the thought of eating the equivalent of 6 slices of bread is daunting. Even in my youth, I probably only consumed the equivalent of maybe 3 slices a day. Like I said before, now I usually focus on trying to eat 60 gram of protein.  I am suppose to consume 100 grams, but have failed to succeed. I will focus on eating gluten starting in July now that I know my procedure date.
    • Scott Adams
      Worried about being isolated

      By Scott Adams · Posted

      I agree with @trents and wiping down the spot you eat your lunch, and eating the food your brought from home should be safe for even sensitive celiacs. Gluten can jump on your food, so it would likely better better for you to continue eating where you prefer.
×
×
  • Create New...