Medical Help

[melmak5]

I spent most of last night on the bathroom floor.

I don't know what the hell is wrong, but needless to say I am ready for this elimination diet (but am secretly hoping it is an easy-to-get-rid-of parasite).

Thanks for the support. Hopefully this will end soon.

[NoGluGirl]

Dear melmak5,

OMG! I am so sorry to hear how ill you were last night! HUGS! I am going with the gallbladder and additional food intolerances. The rotation diet in conjuction with a food journal is a good option. At least that could reduce some of the misery possibly. When I had my gallbladder in, even baby food made me sick. Between the nausea, the reflux, and the pain, it was very unpleasant.

Parasites tend to cause diarrhea a lot. I know most people who have had them either had it or constipation. The type of parasite may dictate which is your primary symptom. I recommend you join the OMG I Think I Might Be Onto Something Thread in the Leaky Gut and Other Food Intolerances section of the forum. My friends over there know a lot, and I think they could help you! Just jump to the last page, because it is over 1,490 pages!

Sincerely,

NoGluGirl

[melmak5]

I feel like I am loosing my mind and/or sounding like a hypochondriac.

I broke out in hives today and I cannot find any cause. I literally ate the EXACT same thing I ate yesterday. (brown rice porridge, flax seeds, ground cloves, cinnamon, prickly pear syrup, a handful of pecans and coconut.)

I feel like my body is falling apart. After the Friday night incident all of the skin on my scalp and eyebrows came off, in this gritty, sand-like consistency.

I have lost weight, but cannot fit into most of my pants because I am so bloated. I have been getting more headaches. I just don't know what else to do or say. The triage nurse at my doctors office told me to go to the ER because of the hives, but they had started to go down (from the benadryl) and she even said they would just give me more benadryl and maybe prednisone(sp?) and sent me home.

I know this is going to sound melodramatic, but I physically feel like I cannot do this anymore.

[longislandlady]

Do not waste another day. Tomorrow, call The Celiac Center at Beth Israel Deaconess Medical Center at the Harvard Medical School in Boston, MA. Here is their website: Open Original Shared Link

I'm showing their phone # is 617-667-7000 or 1272

It might even pay to go to their emergency room.

The only reason I'm telling you this is because my gastro doctor and hospital couldn't do anything for me. I ended up contacting Dr. Peter Green who is the director of the Celiac Disease Center at Columbia University in New York. There are only 7 Celiac Centers in the United States. I would go to the closest one (I see you live in Massachusettes). I was just diagnosed 6 weeks ago with refractive Celiac (which is REALLY bad). Dr. Green is the only one in the New York area that could treat my severe case of Celiac. In 2 months, I lost over 30 pounds because of malabsorption (from the diarrhea). In the 2 1/2 weeks that Dr. Green has been treating me, I no longer have the diarrhea and I'm eating tons of food and have gained at least 5 pounds (I was down to 103 pounds at 5' 8"). Not only am I on a gluten-free diet, but he has me on antibiotics, presdisone and Entocort. I'm alive today because of Dr. Green and the Celiac Center.

You can do it. Make the call.....Good luck!!

[tarnalberry]

I feel like I am loosing my mind and/or sounding like a hypochondriac.

I broke out in hives today and I cannot find any cause. I literally ate the EXACT same thing I ate yesterday. (brown rice porridge, flax seeds, ground cloves, cinnamon, prickly pear syrup, a handful of pecans and coconut.)

I feel like my body is falling apart. After the Friday night incident all of the skin on my scalp and eyebrows came off, in this gritty, sand-like consistency.

I have lost weight, but cannot fit into most of my pants because I am so bloated. I have been getting more headaches. I just don't know what else to do or say. The triage nurse at my doctors office told me to go to the ER because of the hives, but they had started to go down (from the benadryl) and she even said they would just give me more benadryl and maybe prednisone(sp?) and sent me home.

I know this is going to sound melodramatic, but I physically feel like I cannot do this anymore.

It may not be food. Hives can also be caused by environmental allergens. Have you been seeing an allergist or had a full allergy test (I mean a scratch test, not a food allergy blood test).

[NoGluGirl]

Dear melmak5,

You are not crazy! HUGS! You are sick! I know how you feel. I worried I was going insane for a while, too. Then, I realized I was just plain ill.

Hives are caused by many things, as Tarnalberry mentioned. I have skin reactions to dog hair, molds, pollens, dust, dust mites, strawberries, and grasses. They may have nothing to do with food at all. Allergies are so strange that way. There are some surprising causes for symptoms.

OMG! I cannot believe your eyebrows crumbled! That is definitely severe malnutrition. Calling that Celiac center may be what you need. I say go for it! Since they specialize in this disease, that will help tremendously.

Dear longislandlady,

Thank you for the link! It is so true doctors who actually know Celiac are far and few between. I was told by a doctor there was no way I could have Celiac. Obviously, that is wrong. She also told me it was impossible to poop food out whole.

I am so glad you are recovering now. Refractory Celiac is really awful. Finding someone who treats it is nearly impossible. I have the link you provided in my favorites. I know I have other problems going on. I felt great the first couple of months on the diet, then after doing a course of antibiotics, got very ill again. I may have Lyme, and I know for sure I have Candida. Who knows what else?

Sincerely,

NoGluGirl

[longislandlady]

Dear NoGluGirl,

Dr. Green also found Candida in my esophagous when he performed the endoscopy. That was very painful. Between the Cipro the doctors gave me in the hospital and the presdisone I'm on, I'm an autoimmune mess. The doctor also found C.Difficle bacteria in a stool test. I'm still on that medication, too. It's one thing after the other. Dr. Green is weaning me off the presdisone now. Thank God...it makes me very jittery and makes me an easy target for any bacteria or fungus. I go to the doctor this Friday. I'm praying for good news on the biopsies. Though, he did re-assure me that I don't have lymphoma (he said the cultures are looking good). But, I'm still worried and I end up making myself sick. I'm also not sleeping well which causes me more anxiety. No matter what I take, I can't seem to sleep more than 4 hours a night. This Celiac sure upsets a body!!

Have a great Wednesday!!

[NoGluGirl]

Dear longislandlady,

You sound a lot like me! I was on 2 to 4 course of antibiotics per year from birth until now (I am 24). During my teens, I was on steroids for asthma. I also began the Depo-Provera shot due to heavy, painful periods. I could go through a super-plus tampon in an hour. Anemia resulted.

I had five ovarian cysts in a period of less than ten months at the age of seventeen. I am scared to death of going off the shot, because of the problems it could start up again. Prior to the shot, three different birth control pills did nothing, and in fact, seemed to cause more problems since more cysts formed. I began experiencing stomach problems since birth, but they became unbearable in my teens. I was forced to resign from school because the local school corporation refused to education me despite doctor's excuses. I later completed my high school education through the American School and earned a real diploma, tassel and all!

By the time I was 20 years old, tolerating baby food was a problem. Despite tests not showing anything, I was sure by my symptoms I had a bad gallbladder. Finally, after telling the doctor about my research on the poor accuracy of some of those tests, he agreed to refer me to a surgeon. The surgeon has checked and realized I had previously had a gallstone in a much earlier test that the doctor I had before the one I was with at the time completely missed. She had been convinced from day one I was crazy.

I opted to get my gallbladder removed. I just had a feeling it needed out. Thank goodness I did! It was not a moment too soon! It was severely inflamed and irritated, and could have ruptured. Had I listened to my physician, the thing would have exploded inside me, and I could have ended up with pancreatitis, or worse! Your instincts never steer you wrong. Always trust them.

I really hope your biopsies turn out well! Let us know! I am not that surprised by the Candida being found in the esophagus. Someone else on here said her daughter had terrible reflux, and they found Candida in her throat as well with an endoscopy. I know what you mean about the anxiety. My stomach issues make me afraid to go anywhere and do anything without taking my promethazine first. The problem is, I get so drowsy, within a couple of hours, I have to go to sleep. I also take the promethazine if I get glutened. Nausea is my most difficult symptom to deal with.

This disease does mess your entire system up. It can effect your nervous system, digestive system, bialary system, and endocrine system. My thyroid is messed up. I have Fibromyalgia, and there are times I hardly sleep. There are times where I will go three or four days in a row with only a few hours of sleep, and do not know why. Hormones are likely to blame. Meanwhile, I hope you have a wonderful day, too!

Sincerely,

NoGluGirl

[melmak5]

I left Beth Israel (that is where my two GIs were) because of the inadequate care.

My first GI tried to get me to see Dr. Kelly (head of the celiac center), but he nor his assistant could convince the doctor to see me any sooner than 4 1/2 months. So it was suggested I see GI doc #2, who "has experience with celiac patients". (whose favorite phrase was "there is no reason for you to be in pain and/or bleeding")

This doctor kept telling me to take medications and ignoring my question "does this contain gluten" she would shrug her shoulders or say "it doesn't matter, its more important you take it."

So no, I have no really overwhelming desire to go back to Beth Israel.

Do not waste another day. Tomorrow, call The Celiac Center at Beth Israel Deaconess Medical Center at the Harvard Medical School in Boston, MA. Here is their website: Open Original Shared Link

I'm showing their phone # is 617-667-7000 or 1272

It might even pay to go to their emergency room.

The only reason I'm telling you this is because my gastro doctor and hospital couldn't do anything for me. I ended up contacting Dr. Peter Green who is the director of the Celiac Disease Center at Columbia University in New York. There are only 7 Celiac Centers in the United States. I would go to the closest one (I see you live in Massachusettes). I was just diagnosed 6 weeks ago with refractive Celiac (which is REALLY bad). Dr. Green is the only one in the New York area that could treat my severe case of Celiac. In 2 months, I lost over 30 pounds because of malabsorption (from the diarrhea). In the 2 1/2 weeks that Dr. Green has been treating me, I no longer have the diarrhea and I'm eating tons of food and have gained at least 5 pounds (I was down to 103 pounds at 5' 8"). Not only am I on a gluten-free diet, but he has me on antibiotics, presdisone and Entocort. I'm alive today because of Dr. Green and the Celiac Center.

You can do it. Make the call.....Good luck!!

Noglugirl - I do have allergies (from a pin-prick test when I was 7)

Dogs, cats, mold, dust, dust mites, tree pollen, and some flowers.

[melmak5]

tarnalberry - I have not seen an allergist since I was 8.

Right now its been primary cares, GIs and gyns.

[NoGluGirl]

Dear melmak5,

Your experience at Beth Israel sounds as bad as my experience at IU Med! I was never so terrified in my life. After four days of pure hell, they tell me they think I am just nuts. You know what they did to me? I had trouble drinking the prep solution for the colonoscopy, so they threatened to take the solution and pour it down my throat into a tube!

Now, you know if they do not numb you what would happen if they attempt to stick something down your throat.

I was 18 years old, and had never been in a hospital overnight for testing, let alone one out of town. I still remember how scared I was. It still makes me upset thinking about it. I do not know if I will ever get over the horror I experienced up there. Now, keep in mind these doctors are supposedly some of the top experts in the country. By the end of the four and a half days, I had an endoscopy, intercolisis, gastric emptying study, and a colonoscopy in addition to blood work. Yet, after being on a liquid diet for four days, these geniuses could not figure out why I was losing weight! I got down to 84 pounds, when I had arrived weighing 87. I was so weak, my parents feared my body was shutting down, which was why they wanted me to do the testing.

Years later, I am still stuck on that Selective Serotonin Reuptake Inhibitor. You cannot just go off of them. These antidepressants can cause people to flip out and commit suicide if they try to stop taking them abruptly. Even being weaned off of them results in withdrawal that can be difficult to deal with. I worry I will never get off of the Celexa. I am not even any less depressed, because that is not the source of the depression, the ill health is!

I finally was diagnosed with Celiac after years of misery. I have been sickly my entire life. I was doing wonderfully the first couple of months on the gluten-free diet, then I caught a virus. It took me three weeks to get over it. Finally, once I began feeling better, I had to do a course of Flagyl for a bacterial infection. Since then, I have seemed to have gone back to square one. It is incredibly frustrating.

I know for sure I have Candida, but Lyme is another possibility. The issue is trying to find a doctor to interpret the results.

My current doctor is reluctant to do the testing because she cannot interpret Western Blots. The Lyme titers and antibody tests can be wrong. The closest LLMD is in New York, and I have no health insurance and cannot work due to being so sick. That leaves me stuck with my parents at 24, having to share a kitchen with people who eat gluten and carelessly fling crumbs all over the place. For a Celiac, this is like walking in a mindfield with a blindfold on everyday! No matter how paranoid careful and OCD I am, I still manage to get glutened now and then.

I am telling you all of this, because I want you to know you are not insane. You are suffering like I have and do. The frustration is so hard to deal with. Sometimes you think "Why can't I just die? It is not like this is living." There are better days where you do not feel that way, but every bite of food puts you in fear. I do think you may have Crohn's Disease as well possibly. It can cause bleeding.

As far as the allergies go, I have not seen an allergist in about as long! I think I was 7 the last I saw him. I did get testing done again later in 2005. Who would have expected me to be allergic to dogs since I have had them as pets? Even so, I cannot give our Yorkie the boot! That would be cruel! At least now we know if you went outside or something, that may be what caused those hives!

Sincerely,

NoGluGirl

[melmak5]

NoGluGirl - Thank you.

I do sometimes feel like I just want all of this over, and its good to know I am not "nuts."

I didn't eat for most of yesterday and then I ate food at night and burped it up.

So I think I am going to not eat for a while and see how that goes.

I know that not eating is not an answer, but right now I just cannot do it. I feel like everything I put into my body makes it worse.

I got the hives indoors, at work. (it is air conditioned, no flowers, no pets)

I am stumped.

[NoGluGirl]

Dear melmak5,

You are so welcome! Trust me, the misery is something so many of us have gone through. You wonder if you will ever get well, and even wonder why God hates you at times. At least, that is how it feels. My family always was convinced it was in my head, too. That made it even more difficult to deal with. HUGS!

I used to burp food up all the time no matter what. Since my gallbladder was removed, that has improved. You would not believe the things I tried besides not eating to fix it. I went as far as to count to 20 or more when chewing with every bite,

avoided chocolate, coffee, citrus, tomatoes, spicy foods, fried foods, and other things that were said to be reflux triggers. It was ridiculous. I could not even tolerate baby food!

Even it gave me reflux that was so extreme I had to sleep practically sitting straight up! After getting my gallbladder out, it helped a bit. Gradually, things got worse again afterward. Getting rid of the gluten is what turned that around for me.

I am getting problems from the Candida and possibly Lyme now, but gluten definitely triggers a violent reaction. My brother just realized he is Celiac, too.

Here is a thought. The hives might be from mold in the building. Spores can be in the air. If you have Candida, it could be the trigger for them. It can cause rashes to pop up and disappear out of nowhere. This is quite strange, but the yeast is known for this.

Sincerely,

NoGluGirl

[melmak5]

I feel very lucky. My friend has offered to come with my to my doctors appointment tomorrow.

I am not an emotional person but lately I have been breaking down a lot and I just don't want the doctor to be dismissive if I start crying.

Its been 5 months and I think I have been foolish to not have asked for a buddy until now, but hopefully we can work towards figuring out what the hell is going on.

Its suppose to be a "routine intake physical" but hopefully it will be a "lets make Kristina better, NOW!" instead.

[tarnalberry]

I would urge you to see an allergist. GP's may not be sufficiently knowledgable on the subject to get to the cause quickly, and if you don't get a good one, they may just try to medicate or not admit to not knowing.

[NoGluGirl]

Dear Kristina,

I am glad your friend is going with you. That might help. Doctors are so stupid! We practically have to do all the work for them it seems! I can understand your concern about being dismissed if you cry. I went to a GI doctor once that pretty much just told me I was just "overly sensitive to bodily sensations." You know what that really means. The moron then asked my mother why I was crying!

Good luck at the appointment! I am sure some good can come of this. I am frustrated with my current situation as well. Things will get better if you just hang in there! Meanwhile, seeing an allergist might be a good idea, as Tarnalberry mentioned. They could not help me at all. However, you have a different situation, so it could be worthwhile for you.

Sincerely,

Jin

[ravenwoodglass]

I would urge you to see an allergist. GP's may not be sufficiently knowledgable on the subject to get to the cause quickly, and if you don't get a good one, they may just try to medicate or not admit to not knowing.

I agree with this completely. You may have to call a couple to find one who can do an elimination diet many nowadays only want to deal with allergy shots but they can be found. The receptionist will most likely know if the doctor does food allergy and elimination so you don't have to waste your time and money with one who won't.

I know how tempting not eating anything can be. I am currently recovering from a glutening caused by my own stupidity. I know that in the past I have reacted to DR. Pepper but so many other drink these sodas that every once in a while I just have to have one thinking of course that the 'last time' was something else and I was mistaken. So now I am dealing with DH sores all over my arms, face, scalp and in some uncomfortable personal places, nasty D which caused me to lose the 5 hard won pounds I had gained in the last couple weeks since I had to give up soy and casien, and hands that hurt so much I couldn't even type for the last couple days and am tipping sideways, I have put myself in isolation the last couple of days because of course I am also mentally unstable right now and find myself yelling at everyone or crying over the stupidest things. The only good thing is that I also get a speed effect so at least my bedroom is clean but I know the crash will come today or tommorrow. All because I was lazy and had to have a soda. I usually use mineral water and pure fruit juice if I want a soda but sometimes it is so tempting to try and consume like others do. Now all I want is some yogurt but the casien and soy intolerance have left me with only saurkraut as an option for probiotic effects. I like it but it is so much easier to eat a couple tasty yogurts a day than a can of fermented cabbage.

Sorry this turned into a rant, one of those days. This disease and the resulting effects are hard even for those of us who have struggled for years after diagnosis. The FDA has also made things much harder for us with their new regs regarding gluten. We can't even trust companies that say their stuff is gluten-free anymore, like the company that makes the soda I drank. Most likely it comes in under the level the government has said is safe, like Rice Dream does. It really leaves us with little choice other than dealing with only companies that are for sure gluten-free and pure unadulterated food. Why we are allowed to be poisoned with no regard to the fact that even if one serving of a food that is under the level multiple servings in a day of these products add up.

You also may also want to go with enterolab, a lot of the residual problems I had turned out to be from soy and casien. I also got the gene tests done which have been very useful to me as it turns out I have a rare gene, two sets, not normally seen in caucasians. They are associated with the plaque psoriasis my DD suffers from (on gluten) and with a rare form of diabetes. If nothing else research has shown me that when I pass my usable organs will be very much in demand on the transplant circuit, and if I need a transplant of some kind my own family will most likely be the only option.

[NoGluGirl]

Dear ravenwoodglass,

I am sorry to hear you got glutened! I hope you feel better soon. I get glutened periodically due to being stuck living with my parents, who are not gluten-free and refuse to be. I also think I have DH. My face, back, scalp, and neck are covered with what looks like adult acne, but it burns and itches. It is in patches and is almost symmetrical.

Wow, I did not know fermented cabbage had probiotic properties! That is interesting. I take probiotics, but I have a Candida overgrowth and could have Lyme as well. I did great the first two months of the gluten-free diet. Then, after a course of antibiotics, everything went back to square one almost. It is so frustrating.

Sincerely,

NoGluGirl

[loco-ladi]

I wont be much help for most issues you are facing, however, the hives I might be able to help with....

When I was very young I would occationally get them for unknown reasons.

The doctor would do the benedryl

My grammie made a paste of water and baking soda to cover the hives, it seems to reduce the itching involved.

[NoGluGirl]

Dear loco_ladi,

I forgot about that! They use that mixture for bee stings as well. I may have DH. I am not sure. All I know is, these bumps are really problematic. The hives I get out of nowhere can drive me crazy. This might help! Thank you!

Sincerely,

NoGluGirl

[melmak5]

I met with the doctor (primary care) and she was very nice, met with me for an hour and a half, but in the end still has no idea what is wrong.

She wants me to see the GI (who doesn't have an opening for a month) and now an allergist to figure out where the hives are coming from.

I broke down and explained that even though she is new to the situation, I have been sick and in pain since April.

She told me I couldn't not eat anymore and that I need to take the muscle relaxants, especially at night to sleep.

She pushed really hard for putting me on antidepressants. I told her that was the one thing I was not willing to do.

I have given up gluten, coffee, tea, caffeine, chocolate, dairy, processed foods, alcohol and fun, I am not not compliant, but I will not add those drugs into my body.

She also pushed really hard for me to take a fiber supplement and made me promise if I was in sever pain I would go to the ER.

Overall, I feel exhausted and still no better.

[NoGluGirl]

Dear Kristina,

I am sorry to hear you feel like you are going around in circles. I feel that way every single time I go to the doctor, too. Now my doctor has no reason not to do the testing, though. My friend Donna found the interpretations to Lyme Western Blot testing. It is time to get things moving! No more excuses for the doctor!

Be cautious about fiber. Remember, it is good to check things out from every angle. I understand not wanting to be on antidepressants, and believe me, you made the right choice. I am stuck on one I do not know if I will ever get off of it. You cannot go cold turkey with them, and being weaned off of them still can cause withdrawal. Be careful with the muscle relaxers. They are highly addictive.

Sincerely,

Jin

[tarnalberry]

I understand not wanting to take pharmaceuticals, but sometimes it can be the right thing. That's not to say that you're wrong for your decision - it's a very personal decision and a unique one for each and every drug (and drug family). Just that it's a hard decision.

(I have taken muscle relaxants in the past, when I was experiencing horrid muscle spasms. I don't recall exactly how the drug sat badly with me, but it did. This past month, I was experiencing very bad tightness in the neck - the suboccipitals and upper traps. My chiropractor, massage therapist, yoga teacher, and myself all tried to work on them for over a week, but nothing would budge them, or the migraine they were causing. So we tried a different type of muscle relaxant, and I would only take one at night before I went to bed - did that for two nights. It helped just enough that it was all I had to do. The rest I could manage to deal with on my own.

Ironically, my doc would also like to put me on antidepressants for fibro, as some of the current thinking is that low seratonin levels play a role in exacerbating the pain signals characteristic of the condition. I'm also holding off on that one at the moment, but everything is a cost/benefit tradeoff...)

[NoGluGirl]

Dear tarnalberry,

I have Fibromyalgia as well. Anti-depressants have done nothing for me. I would not recommend them. You are smart to avoid them. I was told in the past my stomach issues were caused by a chemical imbalance in my brain of serotonin.

Really, that is just another way of doctors saying you are crazy when they do not really know what is wrong.

In all truth, most people in America have low serotonin levels. They do not get enough EFAs, which lowers the levels. Having hypoglycemia also causes low serotonin. People on high protein diets like Atkins are often depressed, because you need carbohydrates to produce serotonin. The Zone is the smartest plan out there in my opinion. 40 percent of each meal or snack is carbohydrate, while the rest is 30 percent fat and 30 percent lean protein. A zinc deficiency also contributes to reduced serotonin levels.

Sincerely,

NoGluGirl

[tarnalberry]

Dear tarnalberry,

I have Fibromyalgia as well. Anti-depressants have done nothing for me. I would not recommend them. You are smart to avoid them. I was told in the past my stomach issues were caused by a chemical imbalance in my brain of serotonin.

Really, that is just another way of doctors saying you are crazy when they do not really know what is wrong.

In all truth, most people in America have low serotonin levels. They do not get enough EFAs, which lowers the levels. Having hypoglycemia also causes low serotonin. People on high protein diets like Atkins are often depressed, because you need carbohydrates to produce serotonin. The Zone is the smartest plan out there in my opinion. 40 percent of each meal or snack is carbohydrate, while the rest is 30 percent fat and 30 percent lean protein. A zinc deficiency also contributes to reduced serotonin levels.

Sincerely,

NoGluGirl

Even the research studies that have found brain chemistry issues in fibro patients have noted that anti-depressants (and it's a specific set of them, I forget which ones) only help a subset of patients who take them, and that they don't know why. Heck, if you read the prescribing info for the vast majority of pharmaceuticals, they don't actually know the detailed pharmacological nature of why the drug works. Eh... I guess I'm okay with the fact that they don't know a lot about a lot of things. My doctor has been pretty good about being upfront about it. (I think he knows that I go read up on the source research at home anyway. )

(As for the rest, I take fish oil (high dose, my pocket book 'thanks' my chiropractor ), eat a macronutrient balanced diet because I know I'll get hypoglycemic symptoms if I don't, and take a multivit on top of a varied, whole-foods diet which has generally left me without much trouble in the major vitamin area. That may be helping to keep the pain from being worse than it is, but isn't curing me by any means.)