Swelling...I Can'T Take It Anymore

[tatersalad 0]

Hello,

I had the Enterolab test done and here are my results below. I have not had a blood test nor biopsy. I've been really good about avoiding gluten since Oct, prior to that I know I messed up a few times. Anything I eat goes right through me in about 30 minutes. My stomach aches, bloats, grumbles, horrible gas...I am swollen terribly in my hands and wrists and ankles...it is so painful to open anything, typing this is painful. My shoulders are aching, I know this must be from the swelling. The Dr had me on Prednisone,which takes the swelling down right away and my hands go back to normal, my ankles will go down, but not all the way. I seem to be allergic to all these new foods. I have now cut out dairy and soy in these last two weeks. I feel like crap to be honest. This current hand swelling and wrists and shoulders is making me want more Prednisone. I dont know what else to do. My last Pred treatmant was on December 12th. I enjoyed 5 beautiful weeks of no swelling, but a little in my ankles, I could feel the bone on each side, which I was happy! I had one Gluten Free beer and then next morning my hands were swollen, just over night. Not sure how this could happen, because it was a gluten-free beer (I dont even like beer and wished I never went out that night). I'm basically to the point of eating next to nothing now, as I'm scared of what is happening and the less I eat, the less my stomach swells up like I'm pregnant. I feel as though I have leaky gut, almost certain of it. Any advises will be greatly apprecaited as I'm feeling pretty low. This has been going on a 2 years now this April 12th. The Dr's ran every test known to man, CT scan, Ultrasound...they had no answers. I had a hair analysis done on my own and then the Enterolab.

Date: 10/5/2009

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA: 12 Units

Fecal Anti-tissue Transglutaminase IgA: 4 Units

Quantitative Microscopic Fecal Fat Score: Less than 300 Units

Fecal Anti-casein (cow's milk) IgA: 7 Units

HLA-DQB1 Molecular analysis, Allele 1: 0301

HLA-DQB1 Molecular analysis, Allele 2: 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)

Interpretation of Fecal Anti-gliadin IgA (Normal Range is less than 10 Units): Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA (Normal Range is less than 10 Units): The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.

Interpretation of Quantitative Microscopic Fecal Fat Score (Normal Range is less than 300 Units): Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal Anti-casein (cow's milk) IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

[Wolicki 39]

I know what you mean. Since I went gluten free, I have been swollen like a balloon. The doc estimates 60 pounds of fluid retention. Ackk. It's horrible. His best guess right now is that I am not properly processing protein, and where protein goes, water goes. His prescription is "give your body time" to figure it out. I had malnutrition as a result of the Celiac, so I guess it's gonna take a long time.

Why did your doc prescibe prednisone? I used to take it a lot for joint pain, etc. but stopped taking it. I am very curious as to why you take it now.

As far as feeling better, you probably have secondary food intolerances. I would guess, based on my own experience and many others here, that you need to eliminate some other foods, temporarily. Possible culprits: dairy, nighshade veggies, soy, eggs. Have you tried an elimination diet? My list was huge: broccoli, cauliflower, legumes, rice, quinoa (all grains, really), dairy, nightshades, nuts, seeds. All are gone now, except dairy is an issue if I get glutened. I hope this helps. Feel free to PM me if I can offer any advice with the swelling. They haven't completely got mine nailed yet, but maybe we can learn from each other!

Janie

[RiceGuy 55]

Although the swelling I had was not quite as bad as what you describe, it certainly did have me concerned. I concluded that it was due to leaky gut, and that dietary proteins were accumulating in bodily tissues. So, I avoided all high-protein foods. I also discovered that dairy contributed to the swelling, so I cut that as well.

The swelling subsided in a matter of days, though it would be awhile before it went away completely. Once it was nearly gone, I started reintroducing some of the higher protein foods, and things would be ok unless I overdid it. So I would use the swelling as a gage to tell me how much was too much. I haven't tried dairy again though, as it was also contributing to other issues.

Alcohol isn't such a good idea for a damaged gut, gluten-free or not. Besides, even if the beer you drank was 100% gluten-free, the CC (Cross-Contamination) issues are enough to make it hazardous. That's in addition to CC issues with other items you might have ingested.

When you say "I seem to be allergic to all these new foods.", it sounds like you've adopted some prepackaged gluten-free specialty items, like breads and pastas perhaps? If so, I'd recommend letting those go for the time being. Focus on fresh veggies, fruits, beans, nuts, seeds, and meats (if you eat them). Buy them plain, and prepare them yourself. This will not only help avoid many CC issues, but will provide your body with better nourishment with which to heal. The better you can assist your body in healing, the faster you will be able to get there.

You may also benefit from some nutritional supplements, digestive enzymes and probiotics. Some common deficiencies amongst those with Celiac Disease include B vitamins (especially B12), vitamin D, magnesium, iron, folic acid, vitamin K, calcium, potassium, zinc, and probably others I'm not recalling ATM. I guess I'd recommend a good strong multivitamin, and maybe a separate co-enzyme B-complex. Do make certain that all supplements and medications are gluten-free.

Some have found the supplement L-Glutamine to help heal the intestines. You may also want to ask board member "yolo" for some recommendations on soothing and calming the intestines. I do know that fennel and peppermint have long been used to ease gas, diarrhea, and other intestinal disturbances. Whole celery seeds have also been traditionally used for such things.

I'm sure others will chime in with helpful advice.

[Evangeline 3]

I feel so sorry for you.

Interestingly, my body doesn't bloat up with water, my face does! I get horrible contusions on my face anywhere there is a pimple. It was incredibly painful. Before I figured out that I was gluten-sensitive, I figured out that my body wasn't able to digest protein properly. The pain was so bad that I stopped eating protein all together - meat, dairy, nuts, legumes, seeds, soy, to control the pain. Interestingly, all the swelling would go down by day 8, but if I touched even a BITE of protein, the swelling returned within 10 hours.

I decided to stay off protein for as long as my body would allow me - at least until I felt tired or sick. I ended up not breaking the protein-free diet for 1.5 years. I have since learned that the body cannot be deprived of protein if you are eating plenty of fruits, vegetables, seaweed and foods like brown rice.

Someone finally heard my problem and suggested I try Hydrochloric Acid, a digestion supplement available at the health food store. Hydrochloric acid is what breaks down protein into individual amino acids in the stomach. I began taking 5 pills with each meal of protein and 80% of my swelling went away. It is about $10.

I have since learned that Celiac Disease can lower the stomach acid (hydrochloric acid) in certain people's stomachs which causes the protein not to be broken down which in turn causes swelling in various body parts.

[Wolicki 39]

I feel so sorry for you.

Interestingly, my body doesn't bloat up with water, my face does! I get horrible contusions on my face anywhere there is a pimple. It was incredibly painful. Before I figured out that I was gluten-sensitive, I figured out that my body wasn't able to digest protein properly. The pain was so bad that I stopped eating protein all together - meat, dairy, nuts, legumes, seeds, soy, to control the pain. Interestingly, all the swelling would go down by day 8, but if I touched even a BITE of protein, the swelling returned within 10 hours.

I decided to stay off protein for as long as my body would allow me - at least until I felt tired or sick. I ended up not breaking the protein-free diet for 1.5 years. I have since learned that the body cannot be deprived of protein if you are eating plenty of fruits, vegetables, seaweed and foods like brown rice.

Someone finally heard my problem and suggested I try Hydrochloric Acid, a digestion supplement available at the health food store. Hydrochloric acid is what breaks down protein into individual amino acids in the stomach. I began taking 5 pills with each meal of protein and 80% of my swelling went away. It is about $10.

I have since learned that Celiac Disease can lower the stomach acid (hydrochloric acid) in certain people's stomachs which causes the protein not to be broken down which in turn causes swelling in various body parts.

This is really interesting. When you were staying away from protein, do you know how many grams of protein you were getting from veggies and grains? I am on day 3 of a "low protein" diet, staying away from meats, dairy and legumes. I am still getting about 25 grams a day from fruits, veg and grains. I am wondering if this is low enough to help my body get rid of the edema?

[Evangeline 3]

This is really interesting. When you were staying away from protein, do you know how many grams of protein you were getting from veggies and grains? I am on day 3 of a "low protein" diet, staying away from meats, dairy and legumes. I am still getting about 25 grams a day from fruits, veg and grains. I am wondering if this is low enough to help my body get rid of the edema?

I never counted the grams of protein I ate each day. My day would consist something like this:

A baked potato, spinach salad, a bowl of brown rice with curry and tomato sauce.

Or: A bowl of vegetable soup and fruit.

I assume I was getting around 25 grams of protein per day.

The proteins that cause the most severe swelling are meat, lentils, beans and soy (tofu). Those would cause such severe swelling that I'd cry. I've learned to cook a few raw vegan dishes because their diet was so close to mine. They only use nuts and seeds as their protein. Still, I avoided even nuts and seeds for months on end.

[Evangeline 3]

Basically, I learned that it isn't the number of grams that causes the swelling, it is the type of protein. For example, brown rice is high in protein and I can eat as much of that as I like. Spirulina, a seaweed, is the world's most perfect and easily digestible protein, and I could eat bowls of that as well.

But meat, lentils, nuts, seeds, tofu, legumes and dairy caused horrible breakouts.

But on this diet I learned that one must take a calcium supplement unless you are eating enough collard greens and other calcium rich foods.

[GFinDC 700]

Swelling (edema) can be a symptom of an allergic reaction. Many of us develop other food intolerances besides gluten. The most likely culprit is one of the top 8 allergens. The Mayo Clinic list is:

* Milk

* Eggs

* Peanuts

* Tree nuts (such as almonds, cashews, walnuts)

* Fish (such as bass, cod, flounder)

* Shellfish (such as crab, lobster, shrimp)

* Soy

* Wheat

Mayo Clinic list

I suggest you start by eliminating all of these possible allergens from your diet for 2 weeks. Then add one back in for 5 days and see if you have a reaction. If everything is ok then add another the next week. The only ones I don't think you should try adding back are soy and of course wheat. Soy is bad for everyone. Some other common intolerances mentioned on the board are nightshades, and corn. Celery is considered a common allergen in some countries.

[Evangeline 3]

Wolicki, tell me if the low protein diet makes a difference for you? How are you doing?

[Wolicki 39]

Wolicki, tell me if the low protein diet makes a difference for you? How are you doing?

Not sure yet. I can't get on the scale, or I will die of depression I've been doing low protein since Thursday, along with HCL and enzymes with every meal. I certainly have had less gas, and don't feel like I am going to vomit after I eat, which was almost always the case after dinner, and it was usually heavy animal protien. I seem to be urinating more often, and my calves seem less swollen. So the answer is maybe! I am feeling hopeful.

Here's a question, though. I've been on acid blockers for over 10 years. I know I have low acid, because 3 HCL don't cause burning. However, in between meals I am getting terrible heartburn, and I am trying really hard not to take antacids. I've been doing peppermints, which seem to help, but not always. I can't carry around apple cider vinegar everywhere I go, so today, whenever I feel heartburn coming on, I take an ACV capsule that is 35% Acetic acid. It seems to help a bit. Since it's not enough acid, rather than too much that is causing the heartburn, how long is this gonna go on for? Stinks!

Janie

[burdee 82]

Hi Janie: I also began taking HCl capsules (2-4 per meal depending on the amount of protein I consumed) after being on acid blockers for over 10 years. You might want to read "Why Stomach Acid is Good for You" by Jonathon, Wright, MD.

First of all STOP CONSUMING PEPPERMINTS ASAP. Peppermints are one of the foods which weaken the lower esophageal valve, which allows even low amounts of stomach acid to reflux. When you feel acidic between meals drink enough (at least a cup of) plain water to dilute and wash the acid back down. However, you may want to avoid or reduce consumption/use of the following drugs and foods which weaken the lower esophageal valve:

FOODS: fats, chocolate, coffee, mints, sugar, alcohol, onions (as well as any diagnosed (by blood test) food allergens

DRUGS: cigarrettes, bronchodilators, NSAIDs, calcium channel blockers; diazepam (valium), nitrates (nitroglycerin) and demerol

Some foods irritate the esophagus, without weakening the lower esophageal valve. So you might want to reduce your consumption of the following until you stop having so much between meal reflux:

FOODS: citrus fruits and juices, tomato based foods, spicy foods, coffee, carbonated drinks.

DRUGS: aspirin, NSAIDS, tetracycline, quinidine, potassium chloride tablets, iron salts.

Besides avoiding the forementioned foods and drugs, consider:

Eat smaller meals.

Wear loose-fitting clothing tha doesn't squeeze the abdomen and press on the LES.

Limit food intake (especially LES weakeners) during hours prior to bed.

Elevate the head of your bed.

To answer your question about 'how long': You may need to continue taking the HCl capsules, but you will experience much less reflux (if any) after you avoid the forementioned foods and drugs and/or follow the other suggestions.

SUE

Not sure yet. I can't get on the scale, or I will die of depression I've been doing low protein since Thursday, along with HCL and enzymes with every meal. I certainly have had less gas, and don't feel like I am going to vomit after I eat, which was almost always the case after dinner, and it was usually heavy animal protien. I seem to be urinating more often, and my calves seem less swollen. So the answer is maybe! I am feeling hopeful.

Here's a question, though. I've been on acid blockers for over 10 years. I know I have low acid, because 3 HCL don't cause burning. However, in between meals I am getting terrible heartburn, and I am trying really hard not to take antacids. I've been doing peppermints, which seem to help, but not always. I can't carry around apple cider vinegar everywhere I go, so today, whenever I feel heartburn coming on, I take an ACV capsule that is 35% Acetic acid. It seems to help a bit. Since it's not enough acid, rather than too much that is causing the heartburn, how long is this gonna go on for? Stinks!

Janie

[Wolicki 39]

Sue,

ARRRGGGHHHHH! This is a vast left wing conspiracy to get me to give up my coffee, isn't it??? Why oh why oh why coffee?

But seriously, thanks for the help. Peppermints are bad, huh? That's a bummer, too, I've started to enjoy them.

OK, if anyone sees a crazy woman running around Orange County for the next week or so, don't worry! It's just Janie with no coffee

[burdee 82]

Hi Janie: I have just 2 words for you: TRY DECAF!! LOL It's the caffeine which relaxes the lower esophageal valve. Chocolate contains both fats and caffeine, which makes that weaken the LEV as well. At least I waited until AFTER Valentine's day to tell you.

SUE

Sue,

ARRRGGGHHHHH! This is a vast left wing conspiracy to get me to give up my coffee, isn't it??? Why oh why oh why coffee?

But seriously, thanks for the help. Peppermints are bad, huh? That's a bummer, too, I've started to enjoy them.

OK, if anyone sees a crazy woman running around Orange County for the next week or so, don't worry! It's just Janie with no coffee

[Evangeline 3]

Hmmmm, if you are burning in between meals and HCl doesn't cause burning, I would assume that you have very low enzymes?

When I spent the weekend at a raw-food retreat, we were told that many of us would experience extreme heartburn about 30 minutes after meals. This was because our bodies had not eaten enough raw foods (and too many processed foods!) to get enzymes and therefore would have trouble breaking down the raw foods, causing heartburn.

Although I thought I ate a healthy diet, I did experience heartburn for the first time in my life. They said it would lessen if I began eating more unprocessed and ate more raw foods. Since that retreat, I've tried to eat plenty of raw vegetables and I try to make a raw dish at least three times a week. Since then, the burning I experienced to raw food dishes has gone away completely.

My long-winded point: Perhaps your body doesn't have enough enzymes to break down meals. Try a few raw food recipes. They are fun and can be simple.

[txplowgirl 97]

Just a possibility but nightshades causes swelling and pain. ie: potatoes, tomatoes, all peppers and eggplant.

[Wolicki 39]

Hmmmm, if you are burning in between meals and HCl doesn't cause burning, I would assume that you have very low enzymes?

When I spent the weekend at a raw-food retreat, we were told that many of us would experience extreme heartburn about 30 minutes after meals. This was because our bodies had not eaten enough raw foods (and too many processed foods!) to get enzymes and therefore would have trouble breaking down the raw foods, causing heartburn.

Although I thought I ate a healthy diet, I did experience heartburn for the first time in my life. They said it would lessen if I began eating more unprocessed and ate more raw foods. Since that retreat, I've tried to eat plenty of raw vegetables and I try to make a raw dish at least three times a week. Since then, the burning I experienced to raw food dishes has gone away completely.

My long-winded point: Perhaps your body doesn't have enough enzymes to break down meals. Try a few raw food recipes. They are fun and can be simple.

I actually eat raw quite a bit. Virtually no processed food. I take 2 enzyme caps with every meal.

I am thinking it might just take a while?

[LizRam 0]

Just a possibility but nightshades causes swelling and pain. ie: potatoes, tomatoes, all peppers and eggplant.

You are right. The nightshades cause inflamation and pain the body. When I stopped eating potatoes, my arthritic pain stopped.