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lolobaggins

Is what I'm experiencing "normal"? Help!

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Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy.

Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face.

Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?

Edited by lolobaggins

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I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  

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To answer your question about water retention, fluid retention in the arms, legs and face is called edema.  It is a symptom of a variety of medical conditions.  Some of those conditions are benign and will resolve themselves with time, and some are quite serious and require medical attention.  For example, edema is quite common in the last stages of pregnancy.  It can indicate pre-eclampsia, which is serious, and so it needs to be monitored.  

Anyway, I suggest you get a same day appointment to see your doctor, or an in-game physician at a quick care clinic, if he/she is not available.  At least get it checked out, to make sure it's nothing serious.  They will want a urine sample, so make sure you don't tinkle right before you leave the house.

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Welcome to the club that you never wanted to join!  (I plagiarized that from someone else here but can't recall who so I can't give credit to them.)

Anyway, there is a steep learning curve to being gluten free.  It takes time to learn to read labels.  It takes time to heal (like months to YEARS).  Symptoms can wax or wane.  You just have to keep moving forward.  Give yourself time to heal and do not worry about the gym right now.  It will come back later, I promise (from a gal who cycles, swims, and runs).  

Read our Newbie 101 section pinned at the top of the "Coping" section.  It contains valuable tips about cross contamination and hidden sources of gluten.  Read, read, read, the internet from reliable sources (not crazy bloggers).  

You will feel better soon.  

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Hi lolobaggins,

Yes, it is not unusual to have symptoms that come and go after going gluten-free.  Edema (swelling) can also be a symptom of an allergic reaction.  Fatigue is not fun but remember your body is trying to heal a major organ, your gut.  So some rest might be a good idea.  The immune system response is going to keep going for several weeks to several months.  Each little bit of gluten kicks the immune response off again and extends the healing time.  So it's helpful to be very careful with your diet.

Meats, vegetable, and nuts are good foods to eat at the beginning.  And whole foods rather than processed foods.  Dairy is often a problem until the villi are healed.  After a few weeks if things are going well you can try to add one new food a week and see how things go.  But take it slow and easy.  The fewer foods/ingredients we are eating the easier it is to identify problem foods.

Welcome to the forum! :)

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Any time you make a major dietary change you run the risk of nutrient deficits.  You might want to try taking a sublingual or liquid B-complex.  Your damaged intestines may not be doing a good job of extracting nutrients so liquid or sublingual will overcome that.  You can also try digestive enzymes to help your body until the intestines have healed.

  You also may be low on carbs which give you energy.

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