Help.. Desperately Needing Advice!

['lynrn]

Hoping someone here has some suggestions.  I am a 63 yr old celiac, diagnosed almost at birth.  Was on a gluten free diet as a young child but but gradually given a regular diet.  I was always told I was an "allergy celiac" but had outgrown it.  Not certain now what that even means.  In my early fifties was being investigated for non hodgkins lymphoma, Had peripheral neuropathies, just a multitude of health problems ..all seemingly unrelated..  I am a RN, now retired.  One night I was speaking with an internist who had been friendly.  She told me if she didn't know better would say I was celiac as it explained my symptoms.  Told her I HAD been. but had outgrown it...She just laughed..I honestly didn't know it was autoimmune..  I immediately went gluten free with a lot of improvement! Until about a year ago.

I am now retired following an auto accident. This wasn't planned.  I am barely surviving financially. I exist with the help of food stamps and a very small pension. I have limited access to health care through a clinic with a GP on a fee based on income.  Very limited testing available as I can't afford to pay for any. The GP has almost no understanding of celiac disease. I am  having multiple episodes of diarrhea a day.  Up to 20 to 30 times a day. Constant cramping and nausea with some bleeding. It is frequently VERY foul.. I eat a really healthy diet. I grow many of my own veggies. Run a strict gluten free house. almost NO GMO's ... I cook strictly from scratch. Everything is fresh and starts as single ingredients... I suspect multiple food intolerances.  I have already eliminated soy. Tried eliminating dairy.  Still use no milk but do use cheese periodically and butter. I kept a food diary but couldn't find any correlation  between symptoms and specific food other than possibly corn....and the soy I have stopped.  Corn seems to be the fresh product. I have wondered if it was the GMO issue as it is not all the time!  I want to ask for testing of some sort but am not certain what to even ask for. I was Never biopsied as I went gluten free immediately at the suggestion and have very serious reaction to any gluten.  Could not tolerate gluten in my diet again to allow for biopsy.  I do have children and grand children that have been diagnosed celiac. with other intolerances as well. 

 

What would be a logical next step? My doc hasn't a clue. Malabsorption is now becoming a big issue!  B12 deficiency, severe osteoporosis, low calcium, magnesium, anemic, hypothyroid. My electrolytes are frequently really off due to diarrhea.  I need to do something but not certain what to even suggest to her. Being sent on to a specialist is NOT a possibility. She is more concerned about my altered liver enzymes, high cholesterol and triglycerides. Keeps telling me I need to be more careful about gluten! I am getting really sick!  I can not go completely organic. Just can't make money stretch that far with only $100 available after I pay lot rental for my RV that I live in. It just barely covers my BP meds.  Are there any tests that might show other intolerances? or interactions?

[Juliebove]

Well...  Have you been tested for diabetes?  Two things that led to my diagnosis were severe diarrhea that wouldn't stop and neuropathy.  I literally could not walk.  Could only crawl or scoot across the floor.  Actually crawling was even difficult.  I have been told that high blood sugar can cause the D but...  Mine still didn't let up.  The Dr. was baffled.

 

Fast forward many years.  Long story short with daughter, she was diagnosed with food intolerances, including gluten.  I began following her diet to make it easier for her.  And for me, doing the cooking.  I had no eggs or dairy because she couldn't have them.  Then one day, she was at school and I got some stuff from the salad bar at Central Market for lunch.  Including egg salad.  Something like 18 hours later, severe D.  Did not quite relate it to the food and certainly not the eggs!  Thought if anything it was food poisoning and the most common cause for that is stuff like lettuce.  Ate the egg salad.  2 hours later, big D!

 

Then a year or two went by.  Had some eggs that I bought for husband.  Her hadn't eaten them.  I made egg salad and ate a sandwich with it in there.  About 18 hours later, big D!  Then like a fool...  The next day was Thanksgiving.  We were going to my parent's house but eating at an odd time.  Too late for lunch, too early for dinner.  I decided to eat half of an egg salad sandwich to keep my blood sugar stable.  2 hours later?  Big D!  That was the last time I ever ate egg.

 

Then I decided to get tested for food intolerances.  At that point in time it was egg, dairy and almonds.  Since then it has only gotten worse.  We were told to get rested every 3 years or so.  Now I still can't have those things but also lamb, chicken, all fish and shellfish, pecans, macadamias, oats, rye, mint and quite a few different other herbs and spices.  Eliminating those things made quite a difference for me!  I accidentally ate something with oats and broke out itching.  Just last week, I ate something with some seasoning that I can't have and got the big D.  I try to be careful but I do sometimes mess up.  Unlike you, I do try to eat prepared foods when I can.  But really there isn't much in the way of prepared foods I can have.

 

Since you *do* have a thyroid problem, I would look at emliminating the goitrogenic foods.  You already elminated one.  But there are others like cabbage, Brussel sprouts, and some lists even include strawberris and spinach.  This made a difference to me and and *knock wood* I no longer have a thyroid problem.  But...  A thyroid problem can also cause you to test positve for diabetes if the thyroid problem is not being controlled properly.  This happened to the wife of a diabetic I used to know.  Once her thyroid got in range, her blood sugar was fine.

 

As to your other vitamin and mineral defiencies, I tend to have those too.  I have to take handfuls of supplements to keep myself in range.  And that gets very expensive!

 

I am very lucky that I have good insurance.  I am disabled now so have Medicare (not so good) but also Tricare through my husband.  So I never have to worry about stuff that is covered by my insurance.  Like allergy testing.  That actually turned up nothing for me aside from inhalents which I knew that I already had.  Daughter and I do see Naturpaths though and those can be expensive.  But we got lucky and found one that really doesn't charge much at all.  She has helped us a lot.

 

It may well be that you have food intolerances.  Even multiple ones.  And those can be super hard to ferret out on your own.  I just got lucky with the egg I think.  Could probably have guessed the dairy after having been told that I was allergic as a child.  But my mom thought it was just to milk.  She still gave me ice cream, cheese, etc.  Probably because she has no interest in cooking and has no clue what goes into those things.  Plus she thinks that a little of something can't hurt you.  She also has food intolerances and/or alleriges.  Hard to say since what she tells us changes over the years.  And yet she continues to eat the foods that make her ill, always wondering why she is ill.

 

When we kept a food diary for my daughter, the only thing we could determine was that if she got a smoothie from Jamba Juice that contained bananas, her throat would itch.  And yet she could have other smoothies with no problems or even other bananas!  At one point she did test positve to bananas.  So to us, the food diary really did not help at all.

 

We did get IgG testing done through Naturpaths and while the tests helped, they cost thousands of dollars.  And we can't afford that.  My mom paid for our testing although I think she can ill afford to pay that either.  Our last testing done was by a hair sample.  It is highly controversial but...  It really helped us a lot!  Daughter has continued to have some stomach issues but we have finally figured out that they are related to her cycle.  And I do have random problems.  But overall it is much better than it once was.  Plus other problems have cleared up.  Like itching and rashes and respiratory problems.  I used to go through Kleenex like mad.  Now a box lasts me a long time.

 

You might try doing an elimation diet but...  Again this might not work if you have multiple things that you are intolerant to.  Or if like me,  you are intolerant to something like chicken or lamb because these things are commonly eaten on such a diet.

 

Another thing you might try is to keep a food diary not just for symptoms but to make sure you are not eating any one food too often.  We were told to vary our foods daily and not to eat the same thing more than 3 times in a week or on subsequent days.  And I can tell you that this is easier said than done!

 

I sure hope you can find an answer!  Because being sick is no fun.  There are times when I simply just do not want to eat any more.  And other times when I eat little more than white rice or applesauce.  Only because I feel that those foods are safe for me.

['lynrn]

Thanks Juiebov, I am prediabetic or at least close...my fasting sugar was 112 but is usually under the 110 mark. I will try going back to the food diary with symptom journal. I do make a point of really eating a varied diet Potatoes and rice are the only thing that I eat more than twice a week. I am fortunate to have a VERY cooperative guy who will literally eat anything I put in front of him, we eat a very broad range of food. I tend to do the beef, chicken, pork, fish, beans kind of rotation for supper. We tend to have a green and yellow veggie every night with some kind of starch...hence the rice/potato frequency. I was using noodles in there as one but with trying to avoid too many of one kind of grain dropped it, although it still shows up usually once a week. I am just so frustrated... I too sometimes end up just eating rice because I am so hungry but don't know what to even try. I was allergy tested as a child and literally had hundreds of food and environmental allergies. I took allergy shots for over twenty years.. was retested and still showed over three hundred...with what they tested. Basically was told to go out and just try and manage. By then I was married with three kids. Doc said that if I tried to avoid everything on the list I would eat almost nothing, live in a bubble and do nothing. As I was living a pretty normal life, said to just continue and basically stay away from people like him. It seemed to work out until I was in my late forties. I pretty much could eat and do everything...own pets etc.. Now I feel like a semi invalid. I am afraid if I don't get a handle on this I am going to end up really seriously ill.

As it is, I run periodic temps...have swollen glands...ache and am exhausted a good part of the time. I feel like I have a serious case of the flu probably 75% of the time. I barely am able to do the basic self care, laundry, make meals etc. I am exhausted but can't sleep. My MD tried to tell me I was depressed....that is was psychosomatic. Depression is about the only thing I DON"T have.

[greenbeanie]

I'm sure you've probably already thought of this, but did you check you BP meds (and any other meds and vitamins you take) to make sure they're gluten-free?

['lynrn]

Thanks Greenbeanie.. In all honesty I HAVEN"T!! Now my drugstore KNOWS I am celiac....but...here I am off to personally check them all. I know my vitamins are...of course not necessarily corn etc free...

[GFinDC]

Hi Lynrn,

 

Have you tried pro-bioitcs and digestive enzymes?  Psyillium husk capsules with lots of water may help with the D also.  Stopping all dairy for a while is a good idea and all soy.

['lynrn]

Thanks gluten-free in DC. I haven't tried the probiotics and digestive enzymes. I will check into it...That money issue starts to creep in and become an issue. Concerned about the psyllium fiber though. Won't it just make diarrhea worse? It seems that even things like brown rice adds to the problem rather that help...ditto for high fiber fruits and veggies.

[cyclinglady]

"Still use no milk but do use cheese periodically and butter."

 

If you have an allergy or intolerance to dairy (milk proteins: casein and whey), then eating butter and cheese is the same as drinking milk.  That could be part of the problem. 

 

"I do have children and grand children that have been diagnosed celiac. with other intolerances as well. "

 

What tolerances do your children and grandchildren have?  That might help you determine your intolerances/allergies.  My brother and I share almost the same allergies to foods, trees, weeds, cats, etc.  

 

Over 15 years ago, I was diagnosed with allergies.  My top offenders were eggs (yolk and white), cow's milk (casein and whey), garlic, mushrooms and almonds.  There were other minor offenders (e.g. pork, rice, etc.).  Can you believe rice????? My allergist (M.D.) put me on a rotational diet.  I did not consume my top offenders, but did eat the others every four days.  Do some research on a four or seven day rotational diet.  It's easy, cheap and helps calm down the "fire" inflammation.  It might make it easier to help identify intolerances too.

 

I was on this diet for 8 months.  This is just my opinion, but sometimes the foods you really love, are the ones that are making you sick!  

 

I hope others can provide some insight.   Take care.

[1desperateladysaved]

Just take some steps (as you are) and keep walking.  I would keep eliminating more and more gluten as you go.  It is too bad about the "growing out of celiac thought."  Many of us have lived with celiac for years; so welcome to the club!

 

I do suggest the digestive enzymes if at all possible.  My functional Medicine nurse told me that when the intestinal villi are injured they can't do their job of getting the pancreas to fire.  I know my body had a hard time to break down my foods without it.  Without your food being broken down, your nutrient levels will go down.  I guess you could figure that!

 

You mentioned numerous intolerances.  I can relate to that.  I had a antibody blood test for those, which was helpful.  Nearly everything I had been eating I had antibodies.  There were 6 things I had been eating which I did not have antibodies to.  The result was that I ate things that tested clear plus things that were not tested.  I tried to stick to foods I hadn't been eating when I didn't know their antibody standings.  I took a break for 6 weeks so my body could rest.  Now I am trying l food at a time back in.  You may be able to do something like this without the test if you can possibly find things you haven't been eating.  Have you tried Jerusalem artichoke?  I made "tater tots" with them and it was delicious.  Fennel bulb is an unusual vegetable with a licorice like flavor. 

 

I have had symptoms for 30+ years and my experience stems from coping with it using natural remedies all the while not knowing to eliminate gluten!  I have been motivated to cut out all refined sugar, processed food, and even have an organic farm started.  If you have any questions about that kind of experience let me know!  I can help with how to make these things work in your kitchen!  Too bad I am not there to help, but I am rather busy with being a mother of 7.

 

Get Well lynrn,

 

D

[pricklypear1971]

What are you on for your thyroid? Do you have Hashimitos?

If your thyroid is poorly managed: your body doesn't like your med, or you are high in rt3 (and don't tolerate t4 well or at all) - thyroid could be responsible for a huge chunk if what you're describing, including your prediabetic state.

Go over EVERYTHING in your life. Beauty products, medications, kitchen equipment for gluten. Does anyone else bring gluten in the house? Ditch it - they can eat outside.

['lynrn]

Thanks everyone for the feedback so far... I did check my meds and they are all ok for now but with generics...who knows next month! Yesterday...Nothing that I can think of that I shouldn't have eaten...no soy or corn or dairy or even rice..Still with the same bowel issues but I did sleep for the first tie in over a week...I normally average only about two hours...last night about 5...might have been just really exhausted but I don't argue with it. As for being sensitive to food I like... I had thought of that and it is CORN!!! Boy I will hate to give that one up... No probs doing it though...I will completely eliminate that one for the next week or so...and see what difference it makes. Soy is much easier to avoid as I don't buy it and don't use mixes or premade gluten free products. I have written my daughter for a list of their allergies. I know her and her son share little in common...I have no idea how she manages to cook! I allow no gluten products in the house and make my own soaps, shampoos and rinses..It is an economy thing. and no sugar...at least white...I do use molasses and honey...and maple syrup...I just realized one source of gluten in my home and it is in the dry pet food.....anyone with experience with it being a problem? I neither eat it, handle it or is it in contact with any surfaces I use...it shouldn't be a problem should it? I can't afford to replace it right now.. As it is, it is hard to feed these critters a healthy diet on my budget. It is corn free but I am certain some wheat products.

[Laura Wesson]

Cromolyn might help.  I found an inexpensive source (see my post on cromolyn) but in your terms it might still be too expensive. The Open Original Shared Link Dr. Lewey uses oral cromolyn with patients with celiac disease who don't improve with just a gluten-free diet. 

[GFinDC]

Thanks gluten-free in DC. I haven't tried the probiotics and digestive enzymes. I will check into it...That money issue starts to creep in and become an issue. Concerned about the psyllium fiber though. Won't it just make diarrhea worse? It seems that even things like brown rice adds to the problem rather that help...ditto for high fiber fruits and veggies.

 

Hi Lynrn,

 

No, it shouldn't make the diahrea worse.Between the 3 things, pro-biotics, digestive enzymes, and psyillium husks, I think the pro-biotics would be the most useful thing.