Emilem

Does anyone know if oaxalates can contribute to a leaky gut with celiac?

Every time I've tried to do a "leaking gut" healing diet, where I consume lots of fresh fruit and veggies....however, this seems to make my symptoms worse??

JERSEYANGEL -

Just curious, were you able to figure out why you were having a problem with the chicken?

Anyone have problems with chicken???

What are your thoughts on Kefir?? I buy the plain kind, 99% lactose free - but I'm not sure If I will be able to tolerate it right now......?

I am a celiac currently dealing with multiple food intolerances. I have done quite a bit of research, and am t rying to find the best leaky gut healing diet to follow.

From what I can gather, I should stick to mainly:

Unprocessed meats & fish (chicken, turkey, beef)

Low Starch Vegetables

Healthy Oils

I am not sure about fruit, as the high sugar ones tend to bother me from time to time.

Additionally, squash seems to bother me (wondering if it is because the high starch content)

Coconut is supposed to be a gut healing food, however, I tend to negatively react to it.

Looking for any suggestions from people who have tried things that work!!!

Thanks!

I was diagnosed with celiac disease in March of this year (2012) after experiencing an on-set of the following symptoms:

-EDEMA (extreme tissue swelling all over the body that never seemed to subside)

-SINUS CONGESTION and SCRATCHY THROAT

-Achiness

-Fatigue

-Anemia (falling asleep all of the time)

-Severe cravings/constant hunger

I immediately eliminated ALL gluten. I felt better for a few weeks, then I felt progressively worse. I've toyed with elimination diets of all sorts for the past six months. I have been able to pinpoint some problematic foods, but what throws me for a loop, is that some herbs, and possibly some vegetables seem to bother me.

I've recently discovered that many celiacs are sensitive to all lectins when they have a leaky gut. I have felt better cutting these well-known lectins from my diet

-legumes

-dairy

-all nuts

-soy

-nightshades & citrus

However, I feel there are some other things lingering in my diet that contain high lectin levels. Is it true that garlic and onion are high in lectin? Are there any fruits and veggies that are known for high lectin content??

Does anyone have experience with detoxifying the body from salicylates?

I believe I have grown sensitive to them from over-consumption of fruits and veggies in the recent months after having to go gluten and grain free....

I am sticking to mostly these foods for the time being:

white potato

allowed low sal veggies

pears

ricotta and cottage cheese

beef & chicken

eggs

does anyone know how long it takes to clear the sals from your system before you can feel relief/begin re-introducing?

Does anyone know of a link between celiac and salicylate sensitivity? I am diagnosed celiac as of this March - thinking I may have salicylate sensitivity as well based on foods I react to, anyone else??

For those of you with food allergies/intolerances in ADDITION to wheat...how long does the reaction set-in after consumption...

I am suspicious that I have a sensitivity to coconut and sunflower. I ate some sunflower seed butter around 3pm yesterday afternoon and am feeling the affects today - would this sound about right???

Interesting...do you think other things besides the grains were bothering you?? Nuts, beans, fruit?? How long until you felt relief? What were your symptoms if you don't mind me asking.....

This article explains the whole cross-reactivity concept, interesting I know..

Open Original Shared Link

I had to go Paleo to get relief, so maybe the article is right and I was reacting to other foods, particularly the grains. I don't know. All I know is I feel better without any grain and kind of ok if I eat a little rice. It certainly is a battle trying to figure out what you can eat the first year. Is it cross contamination? Cross-reactive foods? Things eventually settled down, but I do know the first year was a roller coaster and the most important thing I learned was not to eat things made in a facility where wheat is also processed. I didn't think I'd be that sensitive but I was/am.

Can you post the articles? I'd be interested in them.

Hi there,

I was diagnosed with Celiac disease mid-March of this year. I have been on a strict gluten-free diet for over six months now. My major symptom, leading up to the diagnosis, was EXTREME edema/fluid retention and fatigue.

For a few weeks after my diagnosis, I began to feel a bit better. But not for long, I actually started to feel worse.

I experimented with some elimination diets this summer, at times they led me to "temporary relief", but nothing long-standing. Symptoms returned worse.

About a month ago, I began to develop sinus problems, scratchy throat, in addition.

I recently came across studies about "cross-reactive foods" like rice, (basically all grains) potatos, tapioca, coffee, etc. There is a list of about 18. The studies says that your body interprets these proteins similarly as it does gluten and therefore launches an inflammatory response. I have been able to link SOME of my symptomatic experiences to these foods, and about 4 days ago decided to begin trying to eliminate these items.

I am writing to ask if anyone has an insight/experience into this topic?? Any comments would be greatly appreciated. I am trying so hard to defeat this - and I won't stop until I find relief!!

I am wondering if there is anyone out there who has had sucessful experiences with elimination diets to alleviate symptoms. I was diagnosed celiac in March and have been on a strict gluten-free diet ever since. Although many of my initial symptoms (anemia, vitamin/mineral deficiencies) have improved, one symptom seems to have gotten worse. I have constant edema that has gotten increasingly worse as time has gone on. I estimate 10+ lbs of fluid retention which results in severe swelling and joint pain. I do have cravings for certain foods -- coffee, peanut butter, from time-to-time, so I am wondering if I have developed intolerances and this is my body's way of reacting.

I set out on an elimination diet Friday. This is my fourth day of the diet. By the end of Friday night I felt absolutely ILL. Like I had a head cold, my whole body felt like a ton of bricks. My joints ached. I was extremely fatigued. I woke up Saturday morning feeling similar and the pain lasted through Sunday. Sunday night I awoke in the middle of the night extremely THIRSTY. When I tried to go back to sleep I was achy, irritated and tired. I woke up feeling as though I had not rested.

I am on day four (sticking to a very limited list of low allergenic foods) and I am wondering when I can expect to start feeling better and if what I'm going through is normal? It is so frustrating and tempting to try and give up!! Looking for anyone to relate......

Thanks

I am wondering if there is anyone out there who can relate/offer advice and knowledge on this issue....

About 7 months ago I started experiencing fatigue and edema/fluid retention. I was achy from time to time as well. The most bothersome symptom, however, was the edema. As time went on, the edema progressed, as well as the other symptoms. We discovered that I was severely anemic in January. My iron saturation was something like 3%. I started taking supplementation but in a month and a half saw very little improvement.

My doctor ran endless blood tests and by default in March, discovered I had celiac disease. I tested positive for the blood antibodies. They performed an endoscopy and confirmed the diagnosis. Three months later, I had another blood work-up completed. My B-12, Vitamin D, Iron, and inflammation are now all in normal range. The fatigue has improved, however, the edema has actually WORSENED. It makes me achy. My legs swell up so much it makes it difficult to get my pants on some mornings, or my shoes. I have definitely noticed that it is dietary as I feel different after eating different things. I have messed around with countless elimination diets at this point and have seen temporary relief at points, but I still struggle.

Truthfully, I haven't really stuck with any elimination diet for more than 5 days before I give up on it and decide to try something else. Currently, I am thinking of restorting to "fasting" for a few days to see if I feel better by completely removing everything from my system.

After that, I am hoping to get back on what seems like the most trusted elimination diet for me (avocados, rice, sweet potatos, some fruits & veggies, olive oil) for a good month to see if I improve.

I am wondering if anyone can relate/offer me any insight? Anyone know if there are common allergies that arise with celiac or gluten intolerance that cause these symptoms? Anyone experienced success with elimination diets and if so, what kinds? Did you experience withdrawel symptoms? Any and all advice is appreciated!! Thank you for reading

i have been on a gluten free diet for 2 months and have yet to see improvement in my edema (swelling) all over the body. i noticed this morning that my shampoo may be the root of the problem? does anyone know if cosmetics could cause this type of reaction, even if they aren't ingested?

Oh believe me! I've been tested for it all...since December they have taken 29 viles of blood from me. Edema was actually my intial complaint (before celiac was diagnosed). They have checked heart, liver, kidney, protein, etc...all fine. The only thing that seems to make sense is maybe that issue of malabsorption?

Could you possibly elaborate further on your complications with malabsorption?? It sounds like this might be what I too am experiencing....drinking water makes me considerably more swollen..I have only been gluten free just over a month....do you think I need to further increase calories?? Or just give it time and maybe add more protein? Sorry for all the questions...just frustrated.

I believe you need to go see a doctor. Edema can be a result of serious medical conditions, kidney/heart and given that you are a marathon runner, and you are really relying and utilizing your heart/kidneys more than the average person, you should be looked at medically.

I have read in a few posts that some people experience refeeding edema while recovering from celiac where they gain a bunch of weight quickly and swell up.......

I am looking for people who can relate to my current situation...

I have been seeing a nutritionist since I was diagnosed with celiac to help me with my new gluten free diet. She tested my metabolism, and told me that before exercise I burn about 3000 calories a day (I am a marathon runner). I also exercise daily. I have been however, experiencing SEVERE edema for months now.

At first, I thought maybe it was just a result of the celiac, maybe it is and it will still take time? I am now wondering if it is a result of poor nutrition. I recently calculated to see on average how many calories I am taking in each day. I had no idea that I am averaging only between 1200 and 1500 calories a day......terrible! I naturally gravitate towards low calorie items like whole fruits and veggies.....

Do you think I am retaining because I am in a state of semi-starvation? I am wondering if I try to up my calories to closer to 3000 if the edema will subside, or if that will make it worse? Would that cause me to gain a bunch of weight in doing so? i am so frustrated and looking for relief.

Anyone who can relate or offer advice?

Thanks

WOW! So much great info..I was beginning to lose hope. Thanks for taking time to provide such helpful info.

" Common in Celiac patients.

Edema is characterized by excess extracellular fluid volume. Reduction in plasma proteins and malnutrition in celiac disease cause edema by failing to provide colloid osmotic pressure sufficient to prevent loss of plasma from capilaries into tissues.

Results from low plasma proteins, multiple micronutrient deficiencies, and vitamin C in lower limb edema.

Resolves on a gluten-free diet. Deficiencies that can contribute: copper, EPA, Protein,and vitamins B1, C, K."

From the book Recognizing Celiac Disease by Cleo Libonati

I see no connection to warts, but if your immune system is over taxed it *could* be contributing IMO? I had trouble with skin cancers before going gluten-free so I know Celiac can do weird things to your skin.

Don't restrict your fluids. Be sure to be strict with the gluten-free diet. Maybe add a bit of protein at each meal, or as snacks? (Nuts, hard boiled eggs are good for this) Be sure you're getting enough vitamin C, and a multi-vitamin should cover the others? As you heal, you'll absorb things better and should see improvement.

Best wishes!

I've had thyroid checked as well..... negative :/ i wish i could figure out what's going on ...

I'm glad that protein in the urine has been ruled out for you.

One of the other things that I have heard people mention is hypothroidism causing edema. Plus, problems with the thyroid is very common in people with celiac.

I have actually had these checked out and no protein in urine which rules out kidney disease, yet the edema still persists :/

Emilem,

Something to consider: I had/have the swelling in my hands, face and ankles. I was recently tested positive for albumin (protein) in the urine which is a sign of kidney disease. Edema is also a symptom of kidney dysfunction.

You might want to ask your doctor to check your protein levels in your serum and urine.

Just recently diagnosed (confirmed blood test and biopsy) with celiac. I am wondering if any of these symptoms I have been experiencing are characteristic of celiac:

-Edema (swelling/fluid retention) that seems to get worse after eating/drinking fluid

-Warts (on the hand) never had them growing up, until about a year ago. In the past few months they have spread and grown rapidly

Does anyone know if these are typical? I've been on a gluten-free diet for about a week now (strict) and the edema has it's moments where it improves, but I am yet to see relief. I am starting to worry it's associated with something else like a candida infection. I am worried I need to further limit my diet? Any input or experiences greatly appreciated, thanks!

thank you! very helpful!

I had this bookmarked from Glutenfreeworks...and maybe it will be of some help?

Edema

WOW those symptoms sound so similar to mine!

It is so uncomfortable

how much fluid weight were you retaining? did it all go away eventually?

did you have to cut out anything else like caffeine/sugar to notice a difference?

sorry for all the questions, its just so nice to have someone to relate to!

Swollen, yes! I felt like I was a stuffed sausage --on fire. My skin felt like it was too TIGHT.

It goes away. I am not sure exactly when I realized I was not feeling like a Macy's Day float anymore. A few months maybe?

Everyone heals at different rates.

Hang in there.

I just found out recently that I have Celiac disease. I have been on a gluten-free diet for a month now. One of my major complaints has been edema. I feel so swollen ALL OVER my body. My abdomen, legs, feet, hands, face. It varies from day to day, but drinking fluid seems to aggravate it further. My kidneys, electrolytes, etc have all been checked out and are fine. I read some posts on here about people retaining up to 30 lbs of fluid, is this possible? I FEEL as if I am carrying around that much water, it tires me, and most importantly it is uncomfortable

Have any of you dealt with this as a symptom of your celiac? If so, how long did it take to go away?

If you have had positive blood tests you need the diet BUT you shouldn't have gone gluten free until after the endo is done as that will cause a false negative. You can go gluten free for life the day of the biopsy.

Celiac can cause edema. In my case it was because celiac was attacking my kidneys but that isn't the only reason as far as I know. In my case the edema resolved within a month or so very strictly gluten free.

Use the time before you can go gluten free to learn as much as you can about the lifestyle as it does involve more than just watching what you eat. Precautions need to be taken in the way food is prepared also. Ask as many questions as you need to while you wait for the endo.

Thank you so much for your reply. I was curious about kidney damage because before the celiac blood test my doc ran some kidney function tests and a urynalysis but everything seemed normal. Is it possible that the celiac could be affecting my kidneys even though the tests showed nothing abnormal? It is giving me hope that you say within a months time you started to see the edema subside..I obviously understand nothing miraculous is going to happen overnight...I just need to be patient. Thanks so much for your insight.

I had an autoimmune flare not long ago and I think I gained about 10 lbs. of water. Then, poof, it went away.

Yes, one of the hallmarks of Celiac and Hashimotos is swelling. I am sure it occurs with the others, too.

When you say autoimmune flare are you referring to a celiac-episode?