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New Here -- My Story


Cynbd

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Cynbd Contributor

Hello all... This week (after thanksgiving dining) I received the results from my blood work showing signs of celiac disease. I have an appointment with GI in Feb (that is as soon as I can get in) I decided that I needed all the information I can get so that my kids know all about this disease as well as the rest of my family.

I have been having problems with lactose intolerance for over 20 years which has gotten so severe the past two years that I finally went to the doctor. She first looked for parasites and bacteria and those results came back normal. Since June I gave up all milk products almost completely. Previous to that I had try to stay away from milk products, but used Lactaid whenever necessary, without fail

I found that the Lactaid really wasn't helping all the time so I decided there must be something more. After my doctor appointment (last May) I gave up milk products completely and found the symptoms dimished drastically. I was no longer vomiting and having D at the same time a couple times a week. But found that I still had D for a few days almost every week. What a life.

Added more Fiber (Kirkland brand Metamucil and Activia Dannon Yogurt (with Lactaid) for the Probiotics) The metamucil seemed to help with the constipation, but I still had D all the time, but not as severe.

I went to the Doc again and told her that I had to get to the bottom of this. I mentioned all my issues again including my suspicion of Wheat allergy (since I always felt bad after eating pretzels and Red Vines, which didn't contain any milk) and so she tested for Gluten. I was positive for spores and my B12 was low.

I have lost quite a bit of weight, but I think that is because I am afraid to eat anything, since it all seems to blow right through me.

I am a 40 something mom and full-time college student. Last night I had to ditch my econ class for a half hour because I felt like I was going to get sick. I had to take two immodium -- I missed the professors lecture on two questions that will be on the final :-( And today I am running back and forth to the loo.

I have been trying to stay gluten free since I heard.. I was initially very happy to finally find a source of my problem that I could control. And Later cried when I realized all the foods I could no longer eat.

I have been pouring through these boards, and manufacturer website, and going to health food stores to find foods that I can eat.

I know I am a way off from de-gluting my house -- especially since I really need to get off these boards and off this research and focus on the last two weeks of school with finals coming up.

I have eliminted my favorite breakfast -- oatmeal with fruit, Metamucil, and now I am pondering coffee, but not sure I can take the withdrawl of caffeine right now.

I was looking to find out if someone can tell me if Dannons Activia Yogurt is safe, and if anyone knows if Tylenol PM is safe, and Citrical. These are a few things I use regularly and wonder if they are causing me problems. And what about Immodium. I don't like to take it, I always felt like my body needs to purge, but there are times that I have no choice -- like a class or exam I can't miss. I actually have to take exams on an empty stomach so I can get through them -- so much for brain power :-o

Oh .. and I also have been diagnosed with Hashimotos disease, I have a goiter, but my blood tests are fine so I am not on anything... my body went Hyper for about 6 months, and then settled down. The doc said that happens sometimes and that my future will go Hypo eventually, when is anyones guess. My mom has hashimotos and my sister ended up with Thyriod cancer -- that is why I had my thyriod checked in the first place.

Ok -- sorry for the long one --- I need to get back to my books.

I am glad I found this board --

Thank you all,

Cindy


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CarlaB Enthusiast

Welcome!

Keep reading the board, you will learn a lot! I don't know about the products you mentioned, I mainly eat naturally gluten-free foods like meat and veggies.

I wanted to mention that if you are planning on having an endoscopy to see if there's damage to your intestine, you do not want to go gluten-free until AFTER the biopsy. The biopsy already has a problem with its false negative rate! If you're gluten-free, there is an even higher rate of false negative as your intestine starts to heal. There is debate on whether the biopsy is necessary, but if you want it, keep eating lots of gluten every day.

If you know you feel better off the gluten, your dietary response shows you have a problem with it and it doesn't really matter if it's full-blown celiac or not -- you will need to be gluten-free!

I'm sure Nini will post ... follow the link to her newbie kit and you will get lots of help from it!

mamaw Community Regular

Welcome

I don't believe Activa is okay. Metamucil depends on what you are using. The fiber bars or just the powder.When I tried the powder I felt funny so I quit, the bars are a no no on this diet.

Ther are many things you can eat but it does take time learning what is ok & what is not. I suggest you start out with naked foods: plain chicken, rice, potatoes , & plain veggies, salads.Then as you have time add in a couple items a week. Start adding some spices to your foods.It does all fall in place & you will be surprised what you still can eat....

Nini has a great newbie kit.....plus posted here is some mighty fine recipes.... The most easy recipe & yummy is from Carriefaith for soft breadsticks. She has posted many as well as Guhlia. I have been making bsticks twice a week & I change it everytime by adding pepperoni, cheeses or spices. The kids just love them for dipping in marina sauce.

If you feel better on the diet & don't care about getting a true dx's , I would just continue with the diet. BUt as Carla stated it will alter your testing later.....

Oh yes, they do sell gluten-free oats these days!!!!!I ordered mine from gluten-free Oats, Powell,WY. There are several who now have them.They all have a website ,plus many gluten-free stores now carry them.Cream Hill Estates in Canada is another supplier.

blessings

mamaw

Nancym Enthusiast

There's a bit link between celiac and thyroid disease (in fact all autoimmune diseases) so it is good you caught this! You might actually go into remission (on the Hashi's) if you're very good about being gluten-free. I've read there's a 30% chance of remission.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
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