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Struggling with Friends & Family and my own mental health.


Jelly bean

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Jelly bean Rookie

Hi there, 

 

This is my first post here.

Please be gentle, it’s been a wild ride for me.  
I’ve been struggling with stomach issues and I finally found out I had celiacs disease June 24th,2024. They started  off an endoscopy which came back with a lot of information. Not only do I have disease. I also have inflammation of the esophagus, stomach inflammation, small intestine inflammation along with stomach sphincter pain issues , too many white blood cells on my small intestine and old inflammation in my stomach and esophagus .I was given omeprazole for 90days to help with all of that. 
 

They wanted a rule out  celiac disease at first, so they did a blood test after my endoscopy and found out that I did have celiac disease. At first, it was really hard and I couldn’t stop crying , then I got excited to try all different kinds of gluten-free options and I found out that not everything goes well with an upset body that still needs healing before you try everything. Now I’m struggling with people not just people family ,friends that don’t understand celiac disease and think it’s just simple and don’t understand cross-contamination and how serious it can be, sitting crying  unable to sleep,  can some of you give me advice? Is there a book I can read? help me through this hard time please. I can’t stop crying. I’m tired. I’m ready to look in a positive direction. They don’t have support groups in my area and I honestly just want a friend sometimes I wish I had celiac friends. That would understand and I can hang out with them, because they understand me ,but that’s not an option because I’m the only celiac friend out there in the bunch of friends I  have. One of my friends thinks I’m just being a baby, another doesn’t want me to bring food … My husbands family is doing the same! They think it’s rude. I’m bringing my own food.
 

I’M so lost for words at this point and I’d like to connect with people here. Thank you for reading and I pray for you all on here too , I wish we all were dealt with a different hand ….. This is hard and it’s only the beginning.


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trents Grand Master

Welcome to the forum, @Jelly bean!

You are not alone! Many in the celiac community go through what you are going through. Much of their reaction is born of ignorance and it might help to gently and patiently educate them as to the nature of the disease. It is an autoimmune disorder which means the consumption of gluten causes the body to attack its own tissues. I'm sure many of your family and friends probably think it's an allergy but it's not. Of course, you are very new to all this yourself so before you can educate others you will need to get a good understanding of it yourself. Develop some talking points that will enable you to introduce your family and friends to what celiac disease really is and the importance of avoiding gluten, where gluten is found, etc. There are all kinds of resources on the internet, even pictures of what celiac disease does to the gut. What I'm saying in a nut shell is, take control but be gracious in doing so. Keep reminding yourself that their insensitive reaction is their problem not yours. Don't let it become your problem. 

I am attaching a link to a chapter from a book written by a woman going through what you are going through. I think you will relate: 

 

Jelly bean Rookie

Thank you so much! 😊 I’ll read this and come back to the post to keep you updated 

Scott Adams Grand Master

I tend to avoid situations where I might be perceived as rude for bringing my own food to a meal. One approach is to just eat beforehand and mention that your new gluten-free diet as the reason your being extra careful, and this might give you a chance to educate your friends and family about celiac disease, as it is important that they understand this now. You will likely encounter some people who either still won't accept this, or will act like they forget it each time, and in those cases you may need to just avoid eating with them. The good news is that the people who really care about you will understand and accept your new diet without question, and you should focus on spending more time with folks in this group.

Wheatwacked Veteran
On 7/26/2024 at 12:12 AM, Jelly bean said:

I was given omeprazole for 90days to help with all of that. 

  • The most common omeprazole side effect is headache. But it can also cause stomach-related side effects, such as nausea, vomiting, or diarrhea.
  • Taking omeprazole at high dosages, or for longer than a year, raises the risk of more serious side effects. These can include bone breaks and pneumonia (a lung infection).   GoodRX

Why do the side effects to me seem as bad as what they are treating?  Not to mention increased gastric cancer risk, long term.

My go to is Original Alka Seltzer.  The bicarbonate neutralizes the acid.  They make one with just Sodium Bicarbonate and Citric Acid, but I prefer with Aspirin.  Aspirin is acetlysalicyic acid.  Salicylic Acid was Vitamin B11 until around the time that Bayer came up with Asprin. If you prefer to avoid aspirin because they've clumped it together as a Non Steroid, consider Willow Bark Tea for anti-inflammatory.

Quote

The use of willow bark dates to the time of Hippocrates (400 BC) when people were advised to chew on the bark to reduce fever and inflammation. Willow bark has been used throughout the centuries in China and Europe, and continues to be used today for the treatment of pain (particularly low back pain and osteoarthritis), headache, and inflammatory conditions, such as bursitis and tendinitis. The bark of white willow contains salicin, which is a chemical similar to aspirin (acetylsalicylic acid). In combination with the herb's powerful anti-inflammatory plant compounds (called flavonoids), salicin is thought to be responsible for the pain-relieving and anti-inflammatory effects of the herb. In fact, in the 1800s, salicin was used to develop aspirin. White willow appears to bring pain relief more slowly than aspirin, but its effects may last longer.   Mount Sinai Hospital: Willow Bark

On 7/26/2024 at 12:12 AM, Jelly bean said:

They wanted a rule out  celiac disease

Gluten Centric Culture will be a good read.

I found 10,000 IU a day of vitamin D ended a 30 year depression in a very short time.  I've been using it since 2015.

With everyone drinking bottled water, Lithium deficiency is growing.  We need around 2 mg a day.  5 mg a day helped my anxiety.  My white coat syndrome even extended to barbershops.  A study in Texas linked Lithium Deficiency to crime, drug use, suicide to low ground water content on a county by county basis.

Quote

Lithium gets its name from "lithos," the Greek word for stone, because it is present in trace amounts in virtually all rocks. It might help mental disorders by increasing the activity of chemical messengers in the brain. Lithium might also be needed for other functions, like the development of blood cells.
WebMD: Lithium - Uses, Side Effects, and More

Quote

Using data for 27 Texas counties from 1978–1987, it is shown that the incidence rates of suicide, homicide, and rape are significantly higher in counties whose drinking water supplies contain little or no lithium than in counties with water lithium levels ranging from 70–170 μg/L; the differences remain statistically significant (p<0.01) after corrections for population density.     Lithium in drinking water and the incidences of crimes, suicides, and arrests related to drug addictions

Quote

Currently, literature shows that low-dose lithium (≤0.5 mM) may be beneficial for cardiovascular, musculoskeletal, metabolic, and cognitive function, as well as inflammatory and antioxidant processes of the aging body.  Beyond its Psychiatric Use: The Benefits of Low-dose Lithium Supplementation

 

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    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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