-
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
-
Get Celiac.com Updates:Support Celiac.com:
-
Celiac.com Sponsor (A17):
Celiac.com Sponsor (A17):
Celiac.com Sponsors (A17-M):
-
Recent Activity
-
- knitty kitty replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1Nateral remedies
I found some information that may be helpful to you. https://www.nccih.nih.gov/health/echinacea#:~:text=However%2C some people have allergic,for short periods of time. And... Role of Echinacea in the management and prevention of acute respiratory tract infections in children: A systematic review of the evidence https://pubmed.ncbi.nlm... -
- knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1
9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?
Welcome to the forum, @dsfraley, I recognize those symptoms as being related to Thiamine B1 deficiency, Gastrointestinal Beriberi. I've had Gastrointestinal Beriberi and my doctors sent me to a psychiatrist. It's not in ones head. Thiamine deficiency covers all the symptoms you've mentioned. With such a high Marsh score, correction of nutritional... -
- knitty kitty replied to MoniqueCham's topic in Related Issues & Disorders4
Celiac Disease, Lymphocytic colitis and Bowel rupture
Welcome to the forum, @MoniqueCham, What a challenging journey you've had! Like you, I studied nutrition, but I earned a degree in Microbiology because I wanted to understand what essential vitamins and minerals were doing inside our bodies. I've come across some information that may be of interest to you. I'll post links below. On my journey... -
- dsfraley posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease19 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?
Hello all, I am writing here in hopes of hearing from the community as to whether the issues my son is facing are relatively common for individuals suffering from Celiac Disease. He is 9 years old, has the HLA2 gene, tested high for the gliadin IgG antibody (not the primary one, but still on Celiac panel), and biopsy of the duodenum came back as Marsh... -
- MoniqueCham replied to MoniqueCham's topic in Related Issues & Disorders4Celiac Disease, Lymphocytic colitis and Bowel rupture
Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to ...
-
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Celiac.com Sponsor (A22):
-
Forum Statistics
-
Total Topics121.6k
-
Total Posts1m
-
-
Celiac.com Sponsor (A21):
-
Who's Online (See full list)
-
Upcoming Events
-
0February 24, 2026 11:30 PM
Until
February 25, 2026 12:30 AM
-
0March 04, 2026 11:00 PM
Until
March 05, 2026 12:00 AM
-
0March 10, 2026 10:30 PM
Until 11:30 PM
-
-
Posts
-
By knitty kitty · Posted
I found some information that may be helpful to you. https://www.nccih.nih.gov/health/echinacea#:~:text=However%2C some people have allergic,for short periods of time. And... Role of Echinacea in the management and prevention of acute respiratory tract infections in children: A systematic review of the evidence https://pubmed.ncbi.nlm.nih.gov/41234257/ Have you been checked for nutritional deficiencies? Vitamins are all natural. They are found in food. With Celiac disease, we may not absorb sufficient quantities needed. We cannot make vitamins, so we need to get them from foods and supplements while we're healing. Have you been checked for nutritional deficiencies? Ask for a Erythrocyte Transketolace Activity Assay. One of my favorite vitamins is Thiamine in the form Benfotiamine. It has really improved my gastrointestinal health. I took Benfotiamine to help get rid of my SIBO. Thiamine (Benfotiamine) help keep the SIBO under control. Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/ Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ -
By knitty kitty · Posted
Welcome to the forum, @dsfraley, I recognize those symptoms as being related to Thiamine B1 deficiency, Gastrointestinal Beriberi. I've had Gastrointestinal Beriberi and my doctors sent me to a psychiatrist. It's not in ones head. Thiamine deficiency covers all the symptoms you've mentioned. With such a high Marsh score, correction of nutritional deficiencies is extremely important. Thiamine deficiency is the first to manifest because thiamine stores run out quicker than other vitamins. Ask your doctor for an Erythrocyte Transketolace Activity Assay as soon as possible! Gastrointestinal Beriberi is under recognized by doctors. Thiamine can be administered by doctors by IV. Thiamine is safe and nontoxic even in high doses needed to correct thiamine deficiency and gastrointestinal Beriberi. Because thiamine is safe, there is no harm in trying Thiamine if only to rule Thiamine deficiency out. Correction as soon as possible is important as symptoms can increase in severity and become life threatening. -
By knitty kitty · Posted
Welcome to the forum, @MoniqueCham, What a challenging journey you've had! Like you, I studied nutrition, but I earned a degree in Microbiology because I wanted to understand what essential vitamins and minerals were doing inside our bodies. I've come across some information that may be of interest to you. I'll post links below. On my journey, I suffered from malnutrition due to the malabsorption of Celiac disease. I regained my health by supplementing with essential vitamins, especially Thiamine B1. Thiamine is needed by every cell, so a low level of thiamine can cause many problems over time. I was put on some medications that aggravated my thiamine deficiency. Many medications can cause interactions with vitamins resulting in deficiencies. Methotrexate causes folate deficiency, but can also cause thiamine deficiency because folate and thiamine share some of the same cellular transporters. Notes on Folate Carriers, Anti-Folate Medications, and Thiamine Deficiency https://hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/ Thiamine deficiency can affect the health of the digestive tract. Thiamine helps regulate the intestinal microbiome, and keeps SIBO in check. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/ Other organs can be affected by thiamine insufficiency. The thyroid, gallbladder, liver and pancreas can be affected by low thiamine. High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/ Thankfully, I found that Thiamine in the form Benfotiamine can improve gastrointestinal dysfunction, as well improve liver function, and thyroid and pancreas health. Benfotiamine can improve harm done by Methotrexate... Protective effect of benfotiamine on methotrexate induced gastric damage in rats https://pubmed.ncbi.nlm.nih.gov/33325753/ I was deficient in other vitamins. I had skin issues that improved with niacin. Perhaps niacin can help your skin problem if it comes back. Response of generalized granuloma annulare to high-dose niacinamide https://pubmed.ncbi.nlm.nih.gov/6225398/ I'm very curious as to what you did to correct your nutritional deficiencies caused by refractory Celiac disease. Refractory Celiac Disease: What the Gastroenterologist Should Know https://pmc.ncbi.nlm.nih.gov/articles/PMC11477276/ Tests for Serum Transglutaminase and Endomysial Antibodies Do Not Detect Most Patients With Celiac Disease and Persistent Villous Atrophy on Gluten-free Diets: a Meta-analysis https://pubmed.ncbi.nlm.nih.gov/28545781/ Hope this is helpful! -
Hello all, I am writing here in hopes of hearing from the community as to whether the issues my son is facing are relatively common for individuals suffering from Celiac Disease. He is 9 years old, has the HLA2 gene, tested high for the gliadin IgG antibody (not the primary one, but still on Celiac panel), and biopsy of the duodenum came back as Marsh 3A classification. He has been dealing with severe nausea (no diarrhea/vomiting), muscle achiness, and flu-like malaise for over 2 months (and he has not been to school during this time -- he has been truly bed or couch-ridden, and to the extent that he can watch a show but does not want to read an easy book or play video games... which he loves). He had a very low-grade rolling fever of about 100.0 that the doctors wrote off because it was very low, occasional, and would only last a couple of hours at a time. Before the onset of this, he struggled with severe weekly migraines that sometimes led to vomiting, or at least not functioning until after sleeping it off (which we thought was associated with too much screen time in school). In any case, given those lab results above, he was diagnosed with Celiac Disease a few weeks back. He has been on a gluten free diet for 3 weeks now. When I say a gluten-free diet, I mean: we have sterilized the house as much as possible (e.g., throwing away everything from the kitchen and replacing unless it was stainless steel, and washing that thoroughly, eliminated all gluten-containing foods from the house except for a few pre-packaged snacks for our other child that she can eat outside of the house such as at school, etc.), we have only given him foods that are certified gluten free unless it was something like meat (not seasoned), have not given him oats (even gluten free marked ones) to be safe, we have purchased new products such as shampoo and toothpaste, etc. He does not have any food not prepared in our house. In other words, if there is cross-contamination, it must be at exceptionally low levels. Despite this, he: continues to have off and on bloating and nausea, continues to have flu-like malaise (though he hasn't had the occasional low-grade fevers for the last 2 weeks, struggles greatly to get to sleep and sometimes wakes up miserable in the middle of the night, cries frequently and constantly expresses how much he doesn't feel good, most often now describes a general feeling of "ickiness" that we cannot pinpoint. The gastro has nothing more to say other than stick with it; the pediatrician says we should try a rheumotologist (if we want) or a psychologist. The former seems unnecessary, and the latter suggests to me a complete lack of understanding of just how miserable he is (and I am highly disappointed by the suggestion and now frustrated with the pediatrician). And so I am looking for support/thoughts: For those of you who have Celiac Disease, or know those affected by it, does this sound accurate? Is there hope? Or do you think we are on track of needing to get more opinions? Thank you.
-
By MoniqueCham · Posted
Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to calm down and because I was stable I made the mistake of not following up with my gastroenterologist. Then other autoimmune problems flared and I tried the methotrexate. It worked like a charm for my skin condition… then my sigmoid colon ruptured. Strange but my autoimmune skin condition remains in remission after 6 months off the medication. We have a very long waiting list to get back into see my GI doctor… I was an emergency referral but am still waiting 6 months after the perforation. I need more surgery to fix a fistula that has formed and to reconnect my colon… I have a colostomy at present. I became a dietitian who specializes in bowel diseases but have never met anyone who’s had so many complications with celiac disease. I have a brother and son who also have been diagnosed. My mother had 4 autoimmune diseases including a vasculitis that eventually resulted in her death and it was my father who had the HLA DQ2 gene. Think I inherited some tendencies from each of them. Thanks again for your response… it feels a little lonely dealing with GI issues when I work so hard to remain gluten free.
-
Recommended Posts
Archived
This topic is now archived and is closed to further replies.