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Edema And Celiac?
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7 posts in this topic

Hello everyone,

I'm getting very frustrated as I research the information on this website because it seems like I have a lot of the symptoms of celiac yet my doctors keep saying that it's likely not celiac because I'm "not thin enough." I've lost about 15 lbs in the last month and a bit (without trying) but I'm still slightly overweight for my build (maybe 10lbs or so) and they say becuase of this is likely not celiac.

Anyways, I noticed that edema is a symptom and this really intrigues me, because for as long as I can remember I've had severe edema in my calves and ankles. No doctor has been able to figure it out, they just get really surprised when I show them my legs and say I must have been built like that. I've even had a doctor say I look like I have the legs of a 300 lb woman (I weigh about 150) but no one does anything about it.

What about celiac causes edema? Is it a constant edema because my swelling has been there for at least 5 years. Also, I have a persistent reddening of the face and neck, especially when I get slightly agitated or stressed, I'll get really red and blotchy, not just "blushing" but really severe.

These are on top of my other symptoms which are pretty much chornic diarrhea and abdominal pain.

Does this sound likely to be celiac? I had to push really hard for the blood work so I'm worried about what to do if it comes back negative? Should I push for an endoscopy or leave well enough alone? The docs keep saying that it's IBS, and I've been following a diet recommended for IBS (no red meat, dairy, caffeine, carbonated beverages, low fat) for a month and a half with zero improvement, which is part of the reason I think it may be celiac.

Sorry this is so long, I'm just getting desperate to figure out what's going on.

Thanks,

Kelly

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Hi Kelly,

When did you have the blood test done? It usually takes about a week to get the results, so I would wait until then to make any decisions. You may very well test positive and then a biopsy would probably be a good idea.

I personally don't know about edema all that much, but I know that what you described for the length of time you have had it is not normal. I can understand why you are so frustrated and worried. I hope your tests come back soon with some answers. Doctors need to realise that not all Celiacs are underweight. Most think that you have to be thin as a rail to have Celiac and that is just not true. The edema is certainly an indication of something not right in your system, so if I were you I would not stop pressing the doctors for testing until you get some answers.

God bless,

Mariann :)

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My specialist says that edema is part of Celiac.

Blessings,

Lily

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Hi all,

I can only add my experience. I had noticed for at least a year and a half prior to diagnosis. that my feet would swell. Not every day, some days more than others, but when they did swell, they got pretty big. I knew that it was not normal, but didn't take the time to ask about it.

Since going gluten-free, that has all but disappeared. Once in a great while, there may be a very slight bit of puffiness, but nothing compared to what it used to be like.

I'm just glad that I don't have it anymore.

Best to all

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Hello Kelly,

Have you had your thyroid levels checked lately? Have thyroid problems myself, I know that swollen ankles and feet are a one of the symptoms, as are bowel problems as of course are palpitations, weight gain or loss depending on hyper or hypo.

Best of luck to you.

SharonP

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Kelly,

Do a google search for edema and malabsorption (also try hypoalbuminemia and malnutrition) and you'll get all sorts of sites with explanations on how celiac (if this is what you have) could cause edema.

Basically, if you're not getting enough protein, either taking it in (think of what starving little kids look like) or absorbing it (celiac), your blood can't hold water so it leaks into other tissues. Also note in these articles that you can be normal weight and be protein deficient.

Happy reading!

Heather

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Hi Kelly,

I too have had the edema and face and neck flushing. About 10

years ago the medical doctor found a "goiter" in my neck.

I was sent to an endocrinologist who found a nodule on

my left thyroid gland. I had surgery to remove it, it was benign,

and the surgeon said that my thyroid was "attacking" itself,

another type of autoimmune disorder. Well to make a long story

short, I have to take levoxyl to keep the same thing from happening

to the right side of my thyroid, I still get the redness mostly if

I am angry or nervous. The other Dr. said that the edema can be from

hormonal imbalance. I was going thru menopause and all the

stress probably triggered my GI problems. Hope you find answers to

your questions..

I just wanted to add that I don't have celiac disease, but I do have a wheat allergy

and I have been on gluten-free diet for about 5 mos with some improvement,

but not there yet..

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    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
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    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
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