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My Symptoms And Help?


Megara7

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Megara7 Newbie

I swear my doctors think I'm just a hypochondriac--I know my father-in-law does because he says so--but I've been struggling with various symptoms for years, and then this summer much more severe symptoms. My symptoms:

GERD

shortness of breath (I just can't take deep breaths sometimes)

irritable bowel syndrome

very low vitamin D, vitamin B12, and somewhat low other vitamins, low iron

very low progesterone and DHEA and testosterone (helped with supplementation through a specialist)

depression, irritability, terrible PMS, anxiety attacks

A year and a half ago, I started having problems with an irregular heartbeat--almost constant. I was diagnosed with mitral valve prolapse after an ER visit, but beta blockers didn't help.

This summer, I started having worse problems. My back muscles have been so tight that I was in constant pain, some days much worse than others. No reason was really found for this. I've had brain fog and headaches and can't remember appointments, have to write everything down. Also, neurological symptoms--tingling legs, buzzing through all my muscles like they are vibrating although you can't see anything. I've always had the occasional (every 3-4 years) attack of costochondritis in my left ribs, but now I have mild to moderate pain in my ribs there all of the time and one rib is more prominent. My doctor is now sending me for testing for multiple sclerosis, a tumor under my ribs although he can't feel anything there and I told him I've always had some issues with my ribs there, and is considering fibromyalgia, chronic fatigue, etc.

Two close friends have recently been diagnosed with celiac disease. These are two friends I've commiserated with because we have many similar symptoms. They are following a gluten-free diet and recommended I just try it. For a week and a half I've done so and I've felt so much better! I can concentrate and my head feels so clear, I haven't had any anxiety attacks, my heartbeat is regular (progesterone supplementation helped this tremendously anyway), and I can breathe! I mean I can take DEEP breaths and feellike I'm getting enough oxygen! My stomach doesn't hurt and although I've still had tingling, it is not as intense.

I'd like to actually be tested, but I see that you shouldn't do the diet before being tested? The thing is, I don't want to go OFF of the diet and have the return of those symptoms! Is there anything else I can do?


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Dixiebell Contributor

Hi! Welcome! No, you need to be consuming about 3 to 4 slices of regular bread a day for the tests but there is always the chance that the tests would be negative anyway. The blood tests are not 100%. If you have been checked for everything that could be wrong and you are feeling better gluten free, why not stay gluten free. I have heard of some docs giving a diagnosis based on response to the diet. Also, have the docs checked your thyroid?

WheatChef Apprentice

Yeah, you're going to have to decide on whether you want the tests done or want to avoid going back on the gluten. If you do want the tests done, contact your doctor to set up the testing and get started on the challenge as dixiebell said. If you react poorly to this reintroduction contact your doctor asap about the change in symptoms, sometimes the reintroduction of symptoms is all the affirmation that people need. I know that I get anxiety whenever I accidentally end up eating gluten, the aversion to going back into that state of mind for any extended amount of time is way more powerful than any doctor's diagnosis ever could have been for me.

Megara7 Newbie

Well, at this point, I'm just going to continue the gluten-free diet. It has helped me so much! I have had my thyroid checked and, at different times, I've had different results. About 6 years ago, I had some cysts in my thyroid and had thyroid radioactive scans that suggested hypERthyroidism, but all of my lab results were normal. Then, 3 years ago, I had a pretty low T3 and took Cytomel. I didn't notice any difference taking it. Then I was told to stop taking it because my T3 was higher but my T4 was low? I was tested again after being off several months and all my levels are in the normal range. So....

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      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.
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