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Tired/fuzzy/ Swollen/bloated But No Stomach Distress?


yumyummum

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yumyummum Rookie

Has anyone tested positive for celiac with the *only* symptoms being extreme exhaustion and that fuzzy brain feeling? Weepy/depressed. I also get a "moon" face and stomach bloating.

These are my symptoms. No stomach issues.

I have gained weight over the past 3 years and seem to CRAVE gluten products. I find that if I eat one thing with flour I get that exhausted and feel that NEED to eat more craving.

So without testing I have gone gluten free to see. (My son has allergies and I am up on elimination diets). I feel like a NEW PERSON!!!! I have ENERGY and feel like "myself" again after 3 years. I THOUGHT I was depressed and couldn't concentrate and even went on meds which did not help and after 2 years finally weaned off of.

SO then I had a small amount of food that had wheat in it and within 10 mins I got that feeling of EXHAUSTION...like I just want to get in bed and sleep. (which i did). My heart even races a little.

So, I guess I am now convinced something is going on. Whether I have celiac or not I will avoid wheat because I feel so much better.

WONDERING if anyone else has celiac without stomach issues?

Is it important to confirm diagnoses?

Where can I turn for more information?

Thanks so much.


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samcarter Contributor

Yep, i have those symptoms. My EMA test came back negative, but I am not fussed about needing an "Official" diagnosis. I tell people now that I have celiac disease, because honestly, they take it more seriously than "gluten intolerance" or "wheat allergy". For some reason.

If i get glutened, I get exhausted. It's not the typical "I'm tired because i didn't sleep well", it's the "somebody slipped sleeping pills in my drink" exhaustion. And fuzzy and depressed, and cravings--yep.

If you want to look into official celiac testing, you will have to be eating gluten for a good number of weeks before getting your blood drawn and possibly an intestinal biopsy. Then again, some people come back negative (I did). Some people have symptoms without having serious intestinal damage. So even if you get tested, you may not test positive.

For my money, a positive response to dietary change is a very good sign that gluten is poison to my body. I didn't always have stomach issues, either--those started just last year, and I only get them now after getting accidentally glutened. My guess is I'm more sensitive now after cutting gluten out of my diet.

yumyummum Rookie

Thanks so much for your response! And yes, the "somebody slipped me sleeping pills" is EXACTLY a good way of putting it.

I have 2 friends with celiac. One never got diagnosed but she is lactose intolerant and knows she can not eat gluten.. serious issues when she does. The other went through lots of testing to confirm the YES she indeed does.

I never suspected I had it until I changed my eating habits after meeting with a trainer at the gym. He suggested I eat really pure clean foods and avoid anything processed. I completely changed how I ate in a desperate attempt to feel better and lose weight. I stopped eating bread and pasta and ate salads and chicken and brown rice. I felt like a NEW person!!!!!

Then we went on vacation to Italy and I was "treating" myself and ate pasta and WOAH..... I got the "someone has drugged me feeling" and realized i RECOGNIZED that familiar feeling. I thought it was because I was overweight and out of shape that I felt like that. But when this happened I realized it was a reaction to something I was eating. This happened on vacation everytime I ate something like a sandwich or things I had stopped eating. I felt I was drugged, got weepy and depressed....ON VACATION in Italy! My husbamd commented how I looked "like I used to" MOON FACE...puffy....HUGE stomach etc. He said he could tell it was a reaction just by looking at me. I came home and went back to my salads and brown rice and protein and FEEL SOOOOOO much better. I may not get a diagnosis because I can't imagine going back to feeling like that for a few weeks to get a test done that may or may not be accurate.

prayin4achange Newbie
Yep, i have those symptoms. My EMA test came back negative, but I am not fussed about needing an "Official" diagnosis. I tell people now that I have celiac disease, because honestly, they take it more seriously than "gluten intolerance" or "wheat allergy". For some reason.

If i get glutened, I get exhausted. It's not the typical "I'm tired because i didn't sleep well", it's the "somebody slipped sleeping pills in my drink" exhaustion. And fuzzy and depressed, and cravings--yep.

If you want to look into official celiac testing, you will have to be eating gluten for a good number of weeks before getting your blood drawn and possibly an intestinal biopsy. Then again, some people come back negative (I did). Some people have symptoms without having serious intestinal damage. So even if you get tested, you may not test positive.

For my money, a positive response to dietary change is a very good sign that gluten is poison to my body. I didn't always have stomach issues, either--those started just last year, and I only get them now after getting accidentally glutened. My guess is I'm more sensitive now after cutting gluten out of my diet.

Wow... that is exactly how I feel!! Except I also have lots of stomach/GI probs. I took the blood test one random day after not eating gluten for a little over a week and of course it came back negative. Then I had an edoscopy w/ colitis but the doc didnt see any reason to take a biospy and specifically check for celiac. She wont have anything to do with checking for celiac. It's kind of annoying if you ask me haha...

Ive heard a lot of other people say (even 2 dear close friends of mine) that they never got the test done but took out gluten and it helped so they tell everyone they have celiac as well. As i see it, u might as well. Same symptoms when you get gluttened. One is more serious to your health but they both cause negative results, so, do whatever you need to to get people to listen to you and be willing to help!

I have so much trouble with "recative hypoglycemia" whether or not that is what I really have and being so exhausted I feel like i got hit by a truck. Yesterday, for example, I did almost nothing all day and barely made the last hr of meeting with the church, and I dont ever miss that haha! Also, I get extremely dizzy, fuzzy, depressed, bloated, and LOTS of cravings for carbs (sweet, salty, and fat ones!) after I have some. This is very interesting.

Does anyone else take magnesium? I take it for constipation, but I wonder if it helps with any other problems? I really am thankful to read everyone else's experiences.

Jenn

SGWhiskers Collaborator

I'll keep it brief since I have a tendancy to ramble.

I DEFINATELY have the sleepiness/fuzzy/vertigo/confusion/aches/pain thing going on when I have gluten. The only digestive thing I had was a couple of months of "normal" looking poo (I'm always constipated). I wouldn't have thought anything of it except it coincided with the onset of the worst of the neuro symptoms.

I have stage IIIc total villous atrophy, and high antibodies, but none to almost no GI symptoms. I definatly don't get gi symptoms from a single glutening.

Why oh why is it OK to share info about my poop on the internet?

ang1e0251 Contributor

That is a poopy question.

caligirl2001 Newbie

I also have problems with feeling tired/fuzzy/vertigo/joint aches & pains when I get into gluten, as well as nausea & headaches. I also feel like I am cold all the time.

My blood test was negative, but I still decided to try gluten free and it made a drastic difference within 48 hours. I decided at that point that I did not need a doctors permission to eat gluten free, or a positive test. How I reacted to going gluten free was proof enough for me. I also lost 15 lbs, and my face no longer looks like I'm on steroids.


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  • 4 weeks later...
kmcoates Newbie

I was in "someone slipped sleeping pills in my drink" mode for months (not fun when you are newly married and trying to finish school!). I was already eating a gluten-free, soy-free diet, which helped with the GI problems, but did nothing for the fatigue/depression/brain fog/joint pains/blurred vision. I went to several MDs, all who said to go back to eating gluten...riiight. Finally, I went to a holistic doctor who thoroughly tested me, and found that it was hypoglycemia and low stomach acid (and he encouraged me to stay gluten-free). I completely eliminated alcohol, sugars, processed foods, and refined carbs, and within a couple of days I was completely back to my old, energetic self. I would recommend eliminating sugars and alcohol just to see if it helps. Eating small meals/snacks often made a big difference, too. Also, the book Adrenal Fatigue was extremely helpful.

Best of luck! And don't let those MDs get you down ;)

labsr4me2 Rookie

Thank you SO much for this post. I have been conflicting over getting tested or not. I have ALL of these same symptoms. I also get the "drugged feeling" almost instantly. It seems as soon as the food hits my stomach. I have read all that I can find on celiac and it did not seem that these were symptoms of it. (or atleast not all of them).

I also went on a Gluten free diet and have felt MUCH better. I am still getting the drugged feeling every once in a while and was wondering if I have gotten cc or if I might possibly have an intolerance to something that I have not thought of yet. I have taken Gluten/Diary/salt out of my diet.

I have many doctors appointments and they all seem to look at me crazy or tell me it is all in "my head." LOL

I do not want to waist a lot of money on endless testing. However I just made an appointment next week with a hollistic doctor because I was thinking my symptoms were not normal and thought I should at least check to see if I was on the right path.

After reading this, I am feeling much better with my diet decision and think maybe a test to determine other intolerances might be best. It sounds like finding out between celiac and intolerance would not make much difference. I would be on the same path either way.

Thank you again. You have ended many tears.....

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      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
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    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • 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
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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