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

Why are the symptoms still here?

kdp

Recommended Posts

kdp Newbie
kdp
Posted

Hi. I'm new, excuse me if this is the wrong place to post this. But Ive been on an incredibly strict gluten free, dairy free, diet for 9 months for my celiac. Mostly just filtered rice and anything with a gluten free and label and no dairy. Some of my symptoms are gone, but there are many that are as prevelant as ever! Poor mental health, depression and concentration, memory, joint pain, muscle weakness, sudden acne breakouts, sleep troubles, low energy, which all make my schooling very difficult. It has gotten me very frustrated as I'm unsure what I'm doing wrong. I buy these very expensive supplements as told to by Dr. though I still feel broken from celiac, even after 9 months. What should be done? Again, getting very frustrated.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome sorry you are still suffering. have they rerun your celiac panel to see if your antibodies have gone down? You mention eating 'anything with a gluten free label' you may want to go with more whole unprocessed foods until you are better healed. If you are consuming item with oats you should drop those items for a bit. Some celiacs don't tolerate oats. Do read the Newbie 101 thread at the top of the coping section. There is a lot to being gluten free over and above just the food. It only takes a tiny bit of cross contamination to activate those antibodies. Even kissing someone who eats or drinks gluten containing items can make us ill if they don't brush their teeth first.

Things can be up and down and some stuff takes longer to heal than other issues. I hope you are feeling better soon.

kareng Grand Master
kareng
Posted
6 hours ago, kdp said:

Hi. I'm new, excuse me if this is the wrong place to post this. But Ive been on an incredibly strict gluten free, dairy free, diet for 9 months for my celiac. Mostly just filtered rice and anything with a gluten free and label and no dairy. Some of my symptoms are gone, but there are many that are as prevelant as ever! Poor mental health, depression and concentration, memory, joint pain, muscle weakness, sudden acne breakouts, sleep troubles, low energy, which all make my schooling very difficult. It has gotten me very frustrated as I'm unsure what I'm doing wrong. I buy these very expensive supplements as told to by Dr. though I still feel broken from celiac, even after 9 months. What should be done? Again, getting very frustrated.

Doesn't sound like a very balanced diet.  Rice and packaged foods?  Try some vegetables, fruit, meat.  

Get your antibodies re-tested.   Not sure you need these "supplements".  Maybe you should see an MD?  Some things may not be due to Celiac.   It is possible to have more than one problem.  

Ennis-TX Grand Master
Ennis-TX
Posted
6 hours ago, kdp said:

Hi. I'm new, excuse me if this is the wrong place to post this. But Ive been on an incredibly strict gluten free, dairy free, diet for 9 months for my celiac. Mostly just filtered rice and anything with a gluten free and label and no dairy. Some of my symptoms are gone, but there are many that are as prevelant as ever! Poor mental health, depression and concentration, memory, joint pain, muscle weakness, sudden acne breakouts, sleep troubles, low energy, which all make my schooling very difficult. It has gotten me very frustrated as I'm unsure what I'm doing wrong. I buy these very expensive supplements as told to by Dr. though I still feel broken from celiac, even after 9 months. What should be done? Again, getting very frustrated.

Crumbs, residue, glutend cook ware, condiment jars, eating out, oats, all can be sources of CC....my other thoughts....are you eating meats, and plenty of greens? Many of the side effects of gluten with the depression concentration muscle weakness can be related to nutrient deficiencies associated with this disease. I would look at a full spectrum B-vitamin like Liquid Health Stress & Energy and Liquid Health Neurological Support I take 1 tbsp each 3 times a day. Also Magnesium is a HUGE issue, if you have the muscle weakness and cramping this is a sign. Bowel Habits can point at which version is best, constipation then Natural Vitality Calm dose 1/4 tsp at first then slowly up til loose stools then dose back down. If standard daily BM then look at Doctors Best Magnesium and just use 1 scoop and see how you feel. Vitamin D is another common issues and again Liquid Health has some in a dropper you can get.  PS what do your docs have you on you might drop it for a bit and see how you feel.
Please look over the 101 thread to see how your doing, also a whole foods only diet is best, keeping a food diary to see what your eating, change up your diet and record symptoms seeing what changes....the acne and joint issues show your reacting to something. Try removing soy, oats, meats, night shades on rotation for a week and see if any clear up as they are common ones in addition to gluten and dairy for these issues. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Archived

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

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


  • Member Statistics

    • Total Members
      128,009
    • Most Online (within 30 mins)
      7,748
    cradford.cc
    Newest Member
    cradford.cc
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      Ortiz-Sánchez JP, Cabrera-Chávez F, de la Barca AM. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients. Nutrients. 2013 Oct 21;5(10):4174-83. doi: 10.3390/nu5104174. PMID: 24152750; PMCID: PMC3820067. AND SEE: Oats Intolerance in Celiac Disease. PLoS Med. 2004 Oct;1(1):e23. doi: 10.1371/journal.pmed.0010023. Epub 2004 Oct 19. PMCID: PMC523841. AND ALSO SEE: Bascuñán KA, Orosteguí C, Rodríguez JM, Roncoroni L, Doneda L, Elli L, Araya M. Heavy Metal and Rice in Gluten-Free Diets: Are They a Risk? Nutrients. 2023 Jun 30;15(13):2975. doi: 10.3390/nu15132975. PMID: 37447301; PMCID: PMC10346754. Celiac disease is one of the most common autoimmune gastrointestinal diseases; over the last decades, its prevalence indicates a mean annual increase in frequency currently calculated at 7.5% per year [23]. celiac disease is triggered by gluten present in the diet and the disease involves autoimmune and inflammatory damage to the small intestine in genetically susceptible individuals. To develop celiac disease a person must inherit the genetic predisposition; however, about one third of the population carries the risk genes and only ~1% of the population develops the disease, indicating that genetics is not sufficient to explain the condition. The environment participates by providing the triggering factor, i.e., gluten, and the disease is activated by environmental factors which, until now, have not been fully understood, among which changes in eating habits and the intestinal microbiota are considered to be significant factors [24,25]; yet, current knowledge is insufficient to explain the mechanisms involved. Currently, the only treatment for celiac disease is a GFD for life. AND ALSO SEE: Dr. Osborne: Although rice is considered gluten-free based on the definition set forth by the FDA, rice does contain a different form of gluten prolamin called orzenin. In my experience, those with known celiac disease or non celiac gluten sensitivity issues do better when avoiding rice.
    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names. Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
×
×
  • Create New...