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So confused


Diane London

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Diane London Newbie

🫣 Hello my name is Diane, I was diagnosed with cileac disease & Barrett's esophagus. Have had 2 scopes done. Second one couple weeks ago.Came back worse than my first. Having such a hard time celiac tells you can eat one thing & Barrett's says no. All I was told was do a gluten free diet for celiac. Barrett's if it hurts me don't eat it that's it. I also have type 2 diabetes. Still on all my meds. I'm so mixed up can't hardly sleep my Barrett's went from stage 2 to stage 3. My celiac went from a 2 to a 6. Can anyone help me to understand please 🙏. I also feel that the food for these is so expensive we should get help some help. Just saying being on disability me & my husband can be hard. Have a wonderful blessed day thank you Diane 🙏 

 


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trents Grand Master

Welcome to the forum, @Diane London!

How long ago were you diagnosed with celiac disease?

Have you checked your meds and supplements for being gluten free? Wheat starch can be used as a filler in pills and also can be used to make the gel caps. I'm attaching this article to help you with the gluten free eating part as there is always a considerable learning curve involved in getting to the point where you are actually eating gluten free and not just eating a lower gluten diet.

If you depend on a lot of premade gluten free foods it indeed gets expensive to eat. However, it's not all that difficult to eat gluten free using mainline foods not bearing the "gluten free" label that are, nonetheless, gluten free by the nature of what they are. But it takes discernment. The key is to focus on fresh meat, veggies and fruit and cooling simple, that is, avoiding a lot of seasonings and sauces, which, can be sources of gluten. This would also probably be helpful in controlling your diabetes. Eating out poses the biggest threat to the gluten free diet effort.

 

knitty kitty Grand Master

Welcome to the forum, @Diane London,

I found cutting out sugar and processed foods very helpful.  I followed the Autoimmune Protocol Diet (AIP diet).  Meat, veggies and fruits are naturally gluten free.  Processed gluten free facsimile foods are not nutritionally sound.  They are filled with excess sugars, excess fibers and fillers and are devoid of vitamins.  

Barret's Esophagitis is connected to Thiamine Vitamin B1 Deficiency.  Celiac Disease causes malabsorption which can result in vitamin deficiencies.  Thiamine is the vitamin that runs out first because we need so much of it but can't absorb enough. 

Have you been checked for nutritional deficiencies?  This is part of proper follow up care for Celiac Disease.  Talk to your doctors about supplementing with essential nutrients while healing. 

I have diabetes as well as celiac disease, too.  Following the AIP diet has helped reduced inflammation and helps keep my glucose levels from becoming too high.  I also supplement with essential vitamins and minerals. 

Most Diabetics are deficient in Thiamine because we lose so much Thiamine because our kidneys don't re-absorb thiamine correctly.  

Here's some interesting reading:

https://hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/

And...

https://hormonesmatter.com/more-about-eosinophilic-esophagitis/

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    • knitty kitty
      Because of your anemia, you may not be making sufficient antibodies.  I hope they did a total IgA as well as the tTg IgA, and DGP IgG.  I hope you will share the results with us.   Anemia, diabetes, and thiamine deficiency can cause false negatives on antibody tests.  Have you been checked for nutritional deficiencies besides the ferritin?  Several vitamins and minerals are needed to correct iron deficiency.  Have you been taking any vitamin supplements? Positive on the genes, I see.  Increases the likelihood...  Good job on ramping up on gluten for the test!
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      Thanks so much for the link and for your thoughts! I have been on a gluten - containing diet and ramped up my intake in the couple of weeks leading up to the endoscopy, so I’m hopeful that the biopsy is painting an accurate picture.    I don’t quite understand what else might be causing the lymphocytosis and the inflammatory cells/ clusters of plasma cells and struggled to get clarity from the specialist. Perhaps this is common and nothing to be concerned about?!   In case relevant, my mother sister are both celiac, and I have the genes: HLA-DQA1*05:01 = Heterozygous HLA-DQB1*02:01 = Heterozygous Thanks again! 
    • knitty kitty
      Welcome to the forum, @ellyelly! How much gluten were you eating in the weeks prior to the endoscopy?  Many people with indeterminate results had cut down or eliminated gluten from their diet beforehand.  This can lower the autoimmune response and decrease the symptoms (lower antibody levels,  reduced inflammation and intestinal damage may heal).   If you weren't eating a sufficient amount of gluten per day in a minimum of two weeks prior to the endoscopy, you may want to do another gluten challenge with repeat endoscopy. Here's an article that explains, be sure to read the comments.   
    • ellyelly
      Hi all, Such valuable insights shared here - I am so grateful to be able to read along! Thank you all for sharing your wisdom.  I (37yo female) have recently had an endoscopy to screen for celiac given a strong family history and extremely low Ferritin for the past 7 years (not responsive to oral supplements). I am awaiting celiac blood panel results (completed post-endoscopy to provide another piece of the puzzle, I think was just an accidental oversight not doing earlier).  The endoscopy results are as follows: Gastroscopy:  Stomach: Mild gastritis and one 4mm benign appearing inflammatory polyp in the body.  Duodenum: Largely normal but few shallow erosions seen in the duodenal bulb. Microscopy:  1. Sections show specialised and non-specialised gastric mucosa with increased numbers of chronic inflammatory cells within the lamina propria including occasional clusters of plasma cells amounting to mild chronic inflammation. No active inflammation, intestinal metaplasia, dysplasia or malignancy is seen. Immunostains for Helicobacter organisms are negative. 2. Sections show small bowel mucosa with normal villous architecture. A mild non-specific intra-epithelial lymphocytosis is noted at the villous tips of uncertain clinical significance. The lamina propria contains a normal population of chronic inflammatory cells. No granulomas or parasites are seen. There is no dysplasia or malignancy. Conclusion 1. Gastric: Mild chronic inflammation 2. Duodemum: Mild non-specific intraepithelial lymphocytosis with preserved villous architecture.  The GI specialist, assuming blood tests come back normal, feels it is unlikely that it is celiac given the normal villous architecture. Suggested continuing on as usual and monitoring for symptoms etc, screening with blood test if required in the future.  Worth a second opinion or does this seem accurate? Anything else I should be considering? I feel a little lost as to how to best proceed! Thanks again.  
    • knitty kitty
      @TerryinCO, Are you taking a B Complex in addition to your B12?  B 12 needs the other B vitamins to function correctly.  Celiac disease and the damage to the intestines makes absorbing vitamins and minerals difficult.  Talk to your doctor and nutritionist about supplementing while you're healing.   Are you on any medication for your Gerd?  Here is often caused by too little production of digestive juices.  Supplementing with a B Complex will help.  
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