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Newly Diagnosed- Recovery And Healing?


Milkweedmouth

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Milkweedmouth Newbie

Hi all! I just got a positive biopsy for Celiac and have been suffering through several weeks of up and downs. The first two weeks off of gluten I progressively felt better, but, after getting accidentally glutened at a trip to the grandmother's I have felt worse and worse for almost two weeks now. Suspect culprit is sausage from gluten free pizza (so happy to have pizza I got careless!) Severe constipation, bloating nausea, fatigue, stomach pains and weird flu like symptoms. Every day is a trial, seriously. I've been extremely dilligint in making sure everything I consume in gluten free since then. I'm just wondering if anyone could offer some advice in terms of recovery and whether I should be concerned about the severity and/or length of the symptoms, and potentially share personal experiences? I feel entirely debilitated and have been offered absolutely no support from my doctor. (last words were "eat a gluten free diet") Any advice in terms of dietary and herbal remedies is greatly appreciated!


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rosetapper23 Explorer

L-Glutamine is a good supplement for helping to heal your gut. If you're like many of us who have celiac, you'll become more sensitive to gluten the longer you abstain from it. Of course, that's no reason to stop eating gluten free--it's just something you'll probably notice when you accidentally get glutened in the future. Also, although you believe you're truly eating gluten free, you may be getting some inadvertent gluten in your diet. Remember, soy sauce and beer both have gluten, as do some supplements and medications. Frozen french fries and hash browns have sometimes been cut with flour to keep them from sticking during the freezing process. Some seasonings also contain gluten. When you first start to go gluten free, it's best to stick with only natural foods--nothing processed. I know that you'll miss pizza (believe me, we all missed pizza....and, lucky you, now there are gluten-free pizza options, which was not the case only a few years ago). Stick to meats, dairy, nuts, vegetables, fruits, rice, and corn for a while, and your symptoms should begin to abate. If not, then you probably have an allergy or sensitivity to another food.

Good luck! We all know how difficult it is to make the adjustment to a gluten-free diet, but believe me--some day you won't even want to eat gluten anymore. You'll crave real foods, not processed junk. It took me about two years to get to that point--until then, I was pretty bitter. The grieving process just takes a while....then all is good again. I promise....

ravenwoodglass Mentor

Most of us have some ups and downs in the healing process. How long before you feel better all the time varies for different folks.

It is a good idea to avoid dairy until you have healed as the part of your intestine that is damaged by celiac is the same part that produces the enzyme that helps us digest dairy. So it may not have been the sausage it may have been the cheese. Go with a whole unprocessed diet for a bit until you have healed and make sure you have done what you need to do to prevent cross contamination in your home like a new dedicated toaster, replacing scratched pots and pans and not cooking with wheat flour for others.

It is not unusual for us to become more sensitive to small amounts of gluten after we go gluten free. It is a pain, literally, but it is your body trying to protect you.

SGWhiskers Collaborator

I hope you recover from this glutening quickly. Keep reading up on all the possible sources of cross contamination and take them seriously. I didn't find a consistent pattern of recovery until I got super strict about the cross contamination. It takes me 2 weeks to do the bulk of my recovering from a glutening and probably 5 to be back to normal. Getting good at the gluten-free diet is a learning process. We all make mistakes and those become less frequent as we go on. It is great that you started to see a difference right away though.

Lots of us feel best with a meat/potatoes/veggies/fruit/eggs diet for 3 months and then add back gluten free mixes, breads, and cereals along with a trial of dairy. Dairy gives many of us issues for a long time.

I'm sure you heard it before, but look into your pots, pans, utensils, can openers, personal hygine products, and grill. Avoid eating out or food others cook for you until you have mastered keeping yourself healthy. The stricter you get, the better you will feel. Give it time and keep hydrated and well rested. I love flax seeds to move the gluten meal out of the GI track asap. I also rely on tylenol to get me through the worst few days of gluten pain. Tylenol PM helps me through the nights and weekends although I wind up just sleeping the pain away.

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    • catnapt
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    • trents
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    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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