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

HELP - what is causing my current symptoms?

glutenanddairyfree

Recommended Posts

glutenanddairyfree Newbie
glutenanddairyfree
Posted

I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it. 

Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an eliminationOpen Original Shared Link and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac.

2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative.

Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein? 

Anyone been in a similar situation or can anyone provide some insight? 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
4 hours ago, glutenanddairyfree said:

I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it. 

Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an eliminationOpen Original Shared Link and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac.

2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative.

Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein? 

Anyone been in a similar situation or can anyone provide some insight? 

What?  Wine that contains  milk?  That is new to me.  

You know that there are about 300 symptoms for celiac disease and you do not have to have intestinal issues.  You do not even have to have ANY symptoms (aka silent celiac).  I think you need to wait for your endoscopy.  When is it scheduled?  I assume it is not for months and that you will be expected to consume gluten daily for 2 to 4 weeks (called a gluten challenge) prior to the endoscopy.  Because you have to be on a gluten-containing diet to get results (see University of Chicago's celiac website).  

Celiacs can have many intolerances that can resolve once the body heals.  

I would be worried about getting a proper diagnosis.  Did your doctor advise you to go gluten free prior to the completion of all testing?  

Fundog Enthusiast
Fundog
Posted

My nurse practitioner explained to me that a lot of people with celiac become temporarily lactose intolerant.  She explained that in celiac disease, gluten damages the villi in such a way that the ends-- the parts that digest dairy look like they've been run down by a lawn mower-- her words, lol.  She said that when that happens you will have issues with dairy products, and you should lay off for awhile until the gut heals and the villi grow back.

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. xxnonamexx
      - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang...
    2. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold. Our bodies have difficulty absorbing and utilizing it. Only 30% is absorbed and less can be utilized. There's some question as to how well multivitamins...
    3. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      I am taking a multivitamin which is pretty bolstered with B’s. Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol. Started Creapure creatine monohydrate in June for athletic recovery and brain fog. I have been working with a Nutritionist along side my Dr. since February. My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t ...
    4. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
    5. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Vitamin and mineral deficiencies can make TMJ worse. Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain. Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease. It's important to eat healthy nutrient dense diets like the Autoimmune...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,316
    • Most Online (within 30 mins)
      7,748
    RickT
    Newest Member
    RickT
    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

    • xxnonamexx
      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      By xxnonamexx · Posted

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
×
×
  • 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.