Need Help And Advice Please....really Sick

[Annnettem]

I have been sick for about 7-8 months although I have always had belly problems since I was young. I was at the point that I was only getting out of bed 2 days a week for the last several months and did not know what was going on until I told my dr what foods seemed to make my belly pain and bloating worse.I had beem through s many tests that proved negative. He thought Celiac. I was tested and all came back negative.

I went gluten free anyway and have felt a bit better, out of bed 3-4 days now, but have been losing weight really quick. I decided to eat a bowel of guten free cereal with whole milk and ate sushi last night with soy sauce and today got really sick and have felt bad all day. Almost crying pain. The problem I have is HOW do I stop losing weight? I no longer eat bread, candy bars, cookies, cakes, whole milk, eggs (makes me really sick) so now it is all veggies, meat, chicken, turkey, and some fruit, and gluten free brown rice bars and water. I am losing so much that as a woman a size 4 is getting too big. I have lost 20 lbs in 6 months and lose by the week. I really need advice on how to gain weight and feel not so weak and in bed anymore! Please! I am also hypoglycemic and have to be careful to avoid too much sugar in the morning also.

I also am dealing with cervical cancer and can not go under the knife when I am not even strong enough to get out of bed most days. I walk a block when I go out and am so tired I have to go home. I am only 35. I am at the point that my bones hurt in the morning if I slept wrong. (do not know if this is due to this disease?) I do believe I have Celiac regardless of what the dr says.

Has anyone had success feeling better or has anyone felt this bad? I have read some of the posts and see that a lot are doing good with gluten free. I also did not know until I read it here today that soy sauce contained gluten or the artificial crab (which I ate also) so now I KNOW gluten is the issue. My stomach feels better gluten free but the rest of me is falling apart. I feel my strength and my life has been taken away

Any recs here? I really am trying to help myself, but I do not know how anymore. I am afraid to eat most days, afraid I will be sick to eat anything besides the basics. Any help would be so wonderful. I am so happy to have found this site!

[darlindeb25]

I was going to mention the soy sauce and you found that out yourself. Have you checked everything else in your home for gluten? Shampoos, lotions, soaps, etc. Are you taking a good multiple vitamin? I'm sure the cancer is a contributing factor here also. My dad was told to use a good supplement drink, gluten free, of course--similiar to the forumla they give babies--Pidialyte.

Others will be along, I'm sure with more advice.

I hope you feel better soon.

[mouse]

I am so sorry that you are so sick. Before I got my diagnosis of Celiac, I lost 53 pounds and was bed ridden the last month. Went into dehydration for nine days. It took me 3 days of trying to sip pedialyte, before I stopped throwing it up. darlindeb gave you good advice to take pedialyte. I could not take the generic and could only keep the name brand down. It took me 3 days to finally work up to half a cup of pedialyte. You have to start getting some nutrients into your body.

I would ask the doctor for the actual test results. Because you are not consuming enough gluten you can have a false negative on the blood test. You can never have a false positive. If you are borderline in the tests, he might have said that you did not have it. But, the amount of gluten you consume on a daily basis will scew the test results. Also, did he take the full panel of blood tests.

There are people on here that had false negatives on the blood, but the endoscopy showed Celiac disease. Both tests can have false negatives, because if the GI doctor does not take enough biopsies and from the right areas, then that test can also be negative. The endoscopy can only confirm Celiac, but cannot rule it out.

Please try to go 100% gluten free, before you become dehydrated. I went gluten-free immed. and noticed a big difference. But, of course, I had no where to go, but up. I was so terrified of eating gluten, that I only ate anything that I was a 100% sure was gluten free. I lived with the telephone calling every 800 number on condiments, etc. You need to check that all of your meds are gluten-free. Many generics have gluten in them. Also check your toothpaste and lipstick.

Good luck and please keep up imformed as we all care.

[miles2go]

Hi Annette,

Yes, I've been there and done everything that you mentioned except for the milk and eggs problem, although I have plenty of other allergies to keep me entertained. Are you sure that you've got cervical cancer, or is it just a problematic pap smear? That would need to be taken care of first, imho. I have never had a positive dx of celiac, even though I had every symptom of full-blown celiac, including my hair falling out and no energy at the time that I went gluten-free. It does take time and patience, but gradually, depending on how long you've been sick (I was like 8 years or so) you will get better. Don't let this do you in, you've found a great resource here and that's about 99% of the solution.

(((hugs)))

Margaret

[CarlaB]

Except for the cancer, I'm that sick.

I went gluten-free a year ago last December and my stomach felt good for the first time in my life. I definately have a gluten problem. I was gluten-free for a year, and still was so sick I couldn't get out of bed. I'm 5'8" and my size four clothes were falling off me and I was buying some stuff in a size 2 ... I even fit into a size 0 skirt at the Limited, but it was a little too tight.

When I went gluten-free and worked hard to gain 10 pounds, I'm now maintaining, but still felt really, really bad. Joint pain, muscle pain, brain fog to the point of disorientation, extreme fatigue, night sweats, etc.

I got tested for Lyme Disease (Open Original Shared Link) and tested positive. At first treatment makes it worse because of the toxins released when the bacteria die off, so I'm still feeling pretty bad, but I get a few good days once in a while.

Look at the symptom list at Open Original Shared Link and see if it's a fit. If it is and if you have more questions, PM me. It seems you do have a gluten problem, but you sound SO MUCH like me, that I had to mention Lyme to you. My celiac tests were also negative, but I had a positive dietary response. Even though there may not be a connection between Lyme and celiac, it sure seems that a lot of Lyme patients do better when they're eating gluten-free. The topic comes up on the Lyme boards ... my Lyme doc tests EVERYONE for celiac to rule it out because the symptoms are almost identical.

Cervical cancer is VERY treatable if you treat it early. I hope you are doing something about it! You are way too young to let this spread and become a life-threatening problem.

[miles2go]

Just a quick mention, I've been tested for both the thyroid and Lyme disease via blood tests.

Are there false negatives?

[tarnalberry]

I'm sorry that you're dealing with cancer as well; as I understand it, that can also make you feel much worse - in this case, including stomach problems.

As for weight gain, you need to eat! The restrictions make it tough, but you've got to get enough quantity of food in you. Due to the hypoglycemia, you need to make sure all your meals are balanced, of course, but you can do that. Make sure to get enough meat - and don't worry about lean meats much at all - and use plant items with fat in them liberally (such as avocado, coconut, and tree nuts).

For instance, I'll have tuna, and put avocado in it instead of yogurt (I dislike mayo), and add tomatoes. Have that with an apple for a good sized snack or part of lunch.

Rice cakes with nut butter (I like almond, myself) make for a quick, relatively balanced breakfast that won't necessarily spike you're blood sugar if you don't skimp on the nut butter.

Roasted potatoes (creamer potatoes have a lower glycemic index than starch (idaho) potatoes, and sweet potatoes are even better), with plenty of olive oil, can compliment grilled meats and veggies and a salad for dinner. Or a stir fry with plenty of variety and not oodles of rice/quinoa/etc.

Fruit and nuts for snack, or a smoothie with coconut milk and a rice based protein powder to balance out the sugars in the fruit are good too.

Mainly, you've got to keep eating, even if it's just a little at a time.

[CarlaB]

Just a quick mention, I've been tested for both the thyroid and Lyme disease via blood tests.

Are there false negatives?

Yes. It's unlikely you were tested by IGeneX, and it's the lab that the Lyme docs use almost exclusively because it has the most sensitive tests. Plus, most docs who are not educated on Lyme Disease use the CDC criteria which is meant for tracking purposes, not diagnostic purposes.

The other thing with Lyme is, the longer you have it, the more likely you are to have a completely negative test. The reason is that the tests don't check for Lyme directly, but antibodies.

I was CDC positive, and my doc STILL told me I was negative!!! So, you have that to deal with, too. It was a big lesson to me that no matter what the test is ALWAYS get a copy of the results.

Thyroid tests can be false negative, too. Google Dr. Broda Barnes. You will find a lot of information about his research on it.

[Ursa Major]

Annette, have you been checked for low iron? Anemia is very common with celiac disease. When I had a ferritin count of 4 a few years ago (40 to 300 is normal) I was so weak that my legs would buckle many days when trying to get up, and I had to stay in bed.

Also, you may have adrenal fatigue and/or hypothyroidism, they can also give you the symptoms you're experiencing.

So, really, you need to do something about the cancer immediately, and you should be checked for Lyme disease, adrenal fatigue, hypothyroidism, and you need to have blood work done to check for nutritional deficiencies. You may be low in vitamin D as well as calcium, magnesium, vitamin K, ferritin, and the B vitamins (especially low vitamin B12 would make you feel really weak and sick).

You also may have more intolerances than just gluten. Since you say you can't tolerate egg and dairy as well as gluten, it is quite possible that you are intolerant to all lectins. Those include ALL grains (including rice and corn), legumes (incl. peanuts and soy), dairy, eggs and the nightshades (potatoes, tomatoes, peppers, eggplant).

This is what lectins do to me: Stomach and bowel problems like cramping, diarrhea, constipation, bloating, gas; excruciating joint and back pain, buckling knees and ankles, fatigue (making me want to sleep day and night), rashes, brainfog, tearing eyes, stuffy nose and others.

If you want to know more about lectins, follow the link in my signature.

I am also intolerant to salicylates. So, my diet is very restricted. Still, I am not losing weight (I wished I would, as I am overweight).

Anyway, I hope you figure it all out and start feeling better soon.

[miles2go]

Good Lord, I've hiked the Appalachian Trail twice. If ever there was a copy and print moment.

Thanks, Carla!

[Annnettem]

Wow, thank you all for replying so fast. I appreciate all of the responses. I have just a few more questions so I can try and get myself on the right track.

Is it really necessary to use even toilet paper and lipstick that is gluten free?

Also for me when I eat gluten my only problems have been an upset stomach that sends me to tears for days, muscle weakness, brain fog, constipation, and muscle and bone soreness. I do think these are due to the gluten although they could be something else, but I have to assume at this point that they are. I also get bumps and blood blisters on my body too. Is it normal that I only have constipation as a bowel issue and not the other way around?

How did I get this when no one else in my family has any issues with anything like this? My daughter is autistic and we are on the guten free casein free diet to try and help with the autism, but she always had really bad stomach problems and crying in pain (she is non-verbal so could not tell me) and when we went on this diet about 8 months ago she improved with no more stomach problems at all, and is so much more alert. How is it that we are the only 2 that have this in my family?

Should I be concerned for going for the surgery for my cervical cancer? I have read that celiac can cause blood clotting issues etc.. Mine is at the point of surgery so I am really scred becuase I feel so weak and my heart races constantly for which I am on heart meds for.

Lastly, after eating gluten (by accident) how long does it take before I will feel better? I ate the gluten the other night, but now every time I eat I get really sick again. I am also so tired for the 2nd day now and do not want to move.

I thank all of you for taking the time to respond to me and I finally feel like I am not alone! I can not believe that 5 years ago I felt like a happy and healthy woman that was ready to conquer the world and now I have become a weak, sore, sick, bedridden woman who feels the life has been sucked out of. Please tell me that some of you now feel like your former self after adhearing to this diet. I could not imagine living like this much longer.

[Ursa Major]

I don't think you need to worry about toilet paper. But definitely lipstick. Think about it, it's on your lips, when you eat you obviously eat some of your lipstick, it's unavoidable!

Diarrhea is one of the POSSIBLE symptoms of celiac disease, and so is constipation. You don't have to have all the possible symptoms (200 of them) to have celiac disease. For some people the only obvious symptom is anemia, and some people don't have any obvious symptoms at all.

My heart used to be racing and skipping all the time when I had anemia. They tested my heart and declared it to be fine. Finally my doctor (after months) decided to have my ferritin level tested, and iron deficiency anemia was the problem with my heart. The heart is a muscle, and muscles need oxygen to function. If there isn't enough iron in the blood to carry along the oxygen, your muscles, including your heart, will be oxygen deprived.

You may have anemia, and instead of getting the needed iron to fix the cause of your racing heart, you're getting medication to fix a symptom of anemia! I hope I am wrong, as that would make your doctor a candidate for the ignorant doctor of the year award . But I've heard worse.

Another problem could be low levels of magnesium, they would also affect the heart, and so would low levels of potassium. It is time your doctor looks at causes, and tries to fix those, instead of covering up symptoms (like most doctors, unfortunately).

You need to DEMAND to have your levels of essential nutrients checked. It is your right, it is not a privilege.

You should not have surgery until you know if you have enough vitamin K for your blood to clot properly, and your hemoglobin and ferritin levels are good enough to not pose a danger for surgery. If your ferritin is really low, you will possibly need iron by intravenous to bring it up sufficiently before surgery.

[miles2go]

I could not disagree more. I think Annette needs to attend to her cancer first.

JMHO

Margaret

[Annnettem]

I could not disagree more. I think Annette needs to attend to her cancer first.

JMHO

Margaret

Thank you for putting this into consideration, but I am being followed by an gyn oncologist that has had me wait for 3 months already thinking that if I increased my uptake of folic acid it could improve a bit since at this point it is carcinoma in situ and see the oncologist in April to re access. He is not very informed about celiac or gluten intolerance and the affects it can have on clotting or healing quicky though. I just want to make sue that I will be giving my body a proper chance to clot and heal so that more issues are not caused form the surgery itself, as well as more strain on my already racing heart. :/ Just trying to cover all of my bases!

[Ursa Major]

I could not disagree more. I think Annette needs to attend to her cancer first.

JMHO

Margaret

Excuse me Margaret, but in order to attend to her cancer and not possibly die during surgery because of low blood counts and bleeding to death because of possible low levels of vitamin K, she needs to have those looked at ASAP. And if she takes heart medication that is unnecessary, that could pose a risk for surgery as well.

So, I am making those recommendations for the sole purpose of being able to take care of her cancer, and coming out of surgery alive. Why would you take exception to that?

[miles2go]

You have your right to your opinion.

Margaret

[CarlaB]

Good Lord, I've hiked the Appalachian Trail twice. If ever there was a copy and print moment.

Thanks, Carla!

And then there's me ... I'd rather stay in a Hilton than a tent any day!

Ursula has some good points about checking your iron and magnesium levels. I'd be working on that quickly so you can get into surgery asap.

I hope it's the gluten causing all your issues ... I, too, get heart issues -- palpitations and skipping beats ... it's very uncomfortable ... it even makes it difficult to breath.

Even though you're checking your iron, magnesium, etc., I'd still get scheduled for the cancer surgery immediately! I wouldn't wait ... cervical cancer can be easy if it's caught early and very deadly if it's not.

[NoGluGirl]

Dear Annette,

Here are things I suspect could be causing some trouble:

You are low on iron and anemic (causes you to feel weak and tired, esp. when you do not eat meat, I have to eat beef twice a week) as well as needing electrolytes, and magnesium and other supplements. They cause heart palpitations and everything else! We got to stop you from losing weight! I was like that once. I actually dropped to 84 lbs. or so at one point. As far as the glutening goes, the fake crab and the soy sauce were likely to blame. Your cosmetics and toiletries are a common culprit as well. But, not to fear! I have a list for you! This should help you out.

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip

Philadelphia Cream Cheese

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)

Snack Foods:

Fritos

Tostitos

Lay's Original Potato Chips

Cool Ranch Doritos (Nacho cheese has gluten)

Act II Microwave Popcorn

Cheetos

3 Musketeers candy bars

Butterfinger candy bars

Reese's Peanut Butter Cups

Meat and Protein :

Eggs

Great Value Frozen Boneless, Skinless Chicken Breasts

Extra Lean ground beef

Carl Buddig lunchmeats all are safe

Johnsonville Original Bratwursts

Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)

Cereals:

Cocoa Pebbles

Fruity Pebbles

Seasonings:

Durkee Cinnamon-ground

Durkee Ginger-ground

Durkee Chili powder

Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)

Emeril's Essence - Asian, Italian

Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)

Miscellaneous:

Ortega Taco Shells

Starkist or Great Value Tuna

Butter Buds

Great Value Soy Milk

Lettuce

Tomatoes

Apples

Pears

Carrots

Great Value Canned Fruits and Vegetables

Del Monte Canned Fruits and Vegetables

Ore Ida Tater Tots

Ore Ida French Fries

Person Hygiene/Cosmetics:

Wet'n Wild (all except for one mascara)

Maybelline (Gluten will be clearly labeled if present)

CoverGirl (Gluten will be clearly labeled if present)

Revlon LipGlides (I am wearing Sparkling Sangria in my avatar)

Olay Quench Body Lotion

Suave shampoos, conditioners, styling aids, and lotions (clearly label gluten if present)

Dove styling products, shampoos, conditioners, and soaps (clearly label gluten if present)

Colgate toothpastes (all)

Crest Whitening Expressions toothpastes (all)

Crest WhiteStrips

Colgate Simply White

deoderant - I use Mitchum for Women

SoftSoap

Household Products:

All Laundry Detergent

Dawn Dish Soap (includes the Power Disolver)

Wisk Laundry Detergent

Murphy's Oil Soap

Cascade

* We use Angel Soft Toilet Paper - just make sure you do not use an end peice, because the adhesive has gluten, and you should do okay.

I am glad you are seeing an oncologist. My grandmother had cervical cancer some years ago. Luckily, they caught it early. Surgery took care of it. You should have the surgery as soon as you are able, but I feel you should have some bloodwork done to find out if you are anemic. Another disease that can cause the symptoms you have described is an adrenal gland disorder called

Addison's Disease. Here is a link: endocrine.niddk.nih.gov/pubs/addison/addison.htm It can be deadly. President Kennedy had it, and no one knew.

I hope this helps a bit!

Sincerely,

NoGluGirl

[miles2go]

I also am dealing with cervical cancer and can not go under the knife when I am not even strong enough to get out of bed most days.

Here is what is blowing my mind and I mean absolutely no disrespect to anyone, especially you, Annette.

It is extremely rare for people in 1st world countries to be deficient in magnesium or Vitamin K, although it is possible.

I'm anemic and have been for who knows how long, currently I'm on 3 iron tabs a day per doctor's orders and will be for at least a year. I'm scheduled for ob/gyn surgery on the 27th of this month (out-patient, hopefully not a big deal). No doctor worth her snuff has ever said to me something like, it's just a little cancer in situ, let's wait until you feel better to deal with it. People die from cancer. I sincerely hope that you would get a second opinion and definitely work on making yourself feel better with your nutritional needs.

That is all.

It's still snowing here in Maine. I'm admittedly grumpy, but still care,

Margaret

[Ursa Major]

It is extremely rare for people in 1st world countries to be deficient in magnesium or Vitamin K, although it is possible.

Margaret, NORMALLY it is rare to be deficient in magnesium or vitamin K. Unfortunately, for somebody with celiac disease it is quite common, because if your villi are flattened, you don't absorb nutrients. Therefore it isn't so farfetched to think that Annette might be deficient in several essential nutrients, including the abovementioned.

[tarnalberry]

Actually, do a pubmed search of "frequency of magnesium deficiency in america" (and that is *not* an optimized search phrase), and you'll find a number of studies that suggest that sub-symptomatic magnesium deficiency is most certainly not uncommon, even among the healthy, even in 1st world countries. Magnesium can be difficult to get in sufficient quantity even in a varied, healthy, diet unless you eat a large quantity of food. (Look up the standard reference values and 'build' a week's worth of food - you'll see how hard it is to stay over 100% RDA without making strong attempts at it; it can be done, but you have to make an effort.) Additionally, the actual quantity of magnesium in our food depends upon the level of magnesium in the soil the vegetable matter we eat, or that the animals we eat, is raised on, and that is *highly* variable geographically, and across time.

[miles2go]

So, I am trying to follow this line of thought with you and Tarnalberry. It is your thinking that vitamin deficiencies are more immediately important than cancer diagonses?

[tarnalberry]

So, I am trying to follow this line of thought with you and Tarnalberry. It is your thinking that vitamin deficiencies are more immediately important than cancer diagonses?

I never said any such thing. I've very specifically said nothing either one way or the other. It's true that sometimes treatment for even very serious, life threatening, conditions will be postponed if the state of health makes the treatment more likely to cause death. It's also true that nutritional deficiencies and other exacerbating conditions usually aren't that serious. But, what's most importantly true is that we're not her doctors and don't have the details of her medical history and status. Without the full information, or at least a whole lot more than we have, we can't make an even mildly informed decision one way or the other.

*ALL* I'm saying is that magnesium deficiencies are not uncommon in the general population, even in 1st world countries.

[NoGluGirl]

I never said any such thing. I've very specifically said nothing either one way or the other. It's true that sometimes treatment for even very serious, life threatening, conditions will be postponed if the state of health makes the treatment more likely to cause death. It's also true that nutritional deficiencies and other exacerbating conditions usually aren't that serious. But, what's most importantly true is that we're not her doctors and don't have the details of her medical history and status. Without the full information, or at least a whole lot more than we have, we can't make an even mildly informed decision one way or the other.

*ALL* I'm saying is that magnesium deficiencies are not uncommon in the general population, even in 1st world countries.

Dear tarnalberry,

I am not surprised to learn this at all. 1st world countries tend to eat a lot of processed foods. We have nothing that is pure anymore it seems. Genetically Modified Organisms (GMOs) particularly are a bad idea. This Frankenfood is not good for us. Celiac disease definitely can make absorbing any nutrients in that food very difficult.

Dear miles2go,

I also agree that anemia is a concern, but the cancer should be treated ASAP. Surgery can be deadly for someone with this condition. They could bleed to death on the table if proper precautions are not taken. The good thing is, iron supplementation is usually the best way to go. In this woman's case, I would go with injections or sublingual tablets if possible. I myself do not tolerate iron supplements, as they upset my stomach.

With malabsorption issues, food sources would likely do no good either. Injections are probably a smarter option that would be most effective.

Sincerely,

NoGluGirl

[Ursa Major]

So, I am trying to follow this line of thought with you and Tarnalberry. It is your thinking that vitamin deficiencies are more immediately important than cancer diagonses?

I think you totally misunderstand what Tiffany and I are saying. I believe that WHILE the cancer gets looked after, bloodwork should also be done to find serious, and during surgery, potentially life threatening deficiencies. What is wrong with looking after those things all at the same time?

As NoGluGirl pointed out, if you're anemic and lack vitamin K, surgery (which is always dangerous to begin with) can get life threatening.

Also, if you're on heart medication that is erroneously given, as is possible in Annette's case, that in itself can be dangerous. Those deficiencies (if they are there) can be fixed with some simple injections before any surgery, making the outcome potentially much more positive.

None of the things I suggested should postpone the planned cancer treatments, but could be very helpful in ensuring safe surgery.

If you're too weak to survive surgery, then what good is the surgery going to be?

This is my last word on this subject, I am getting quite tired of this silly argument.

Annette, if you're still reading, I sincerely hope you get it all figured out, and will get well soon.