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I don't think I have celiac. What else could it be?

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I'm getting a blood test next week, but I don't think I have celiac. I hoped perhaps someone might have some ideas about what is wrong with me since you all seemed to have gone through a ton of docs!

1.5 years ago, my insomnia got bad (3-4 hours sleep each night). At 34, I became clumsy, bumping into things and falling down twice. My memory got worse. My left quad kept falling asleep when I laid down. After a few months, I started getting 5 hours sometimes. My shrink (more on that below) told me to take a Benadryl every night. It worked. After around 5-6 months, My balance, clumsiness, and memory improved. I slept eight hours again. However, occasionally I still felt like I'd been run over (exhausted and sore all over for no reason). My terrible menstrual cramps improved from having to take a couple of Aleve just to sit up, to me taking nothing at all. My 4-5 day period reduced to 2-3 days. Nearly a year passed. I tried to get off the Benadryl. I had a good couple of weeks then my sleeping turned to s$#& again. My hands and feet started falling asleep, just like my quad. My memory got worse. The change in my period worried me, partially because I'd started having transient, mild pains in my abdomen. I found a GP and FINALLY went to to the doctor. I laid EVERYTHING out. I told her about the symptoms that brought me in, and then began listing all the other symptoms I've had for years: constant constipation (2-3 days between bms) with bouts of random diarrhea, bloating and intestinal gas, migraines, fatigue even when working out consistently, being cold all the time indoors. I knew I had problems with lactose intolerance too, though I could handle a bit.

The last time I went to the doctor in 2007 was pretty terrible. I went for insomnia (sometimes I didn't sleep for days). Since I was "healthy" (working out nearly every day, mostly heavy weightlifting, eating healthy), I didn't think it was medical. I went to a therapist. She sent me to shrink. He talked to me for 10 minutes and diagnosed me as bipolar. I told him I was exhausted when I couldn't sleep, not manic. He waved off the concern. I went to an actual doctor. I said I don't think I have bipolar. I just need something to get me a few days sleep. I also outlined my stomach problems and told her I thought a food allergy was causing my problems. I told her my mom gets horrible diarrhea whenever she eats wheat. I thought I might be allergic to it since my migraines and stomach issues didn't seem as bad when I reduced it. I'd heard of celiac, and I specifically asked about that. She practically rolled her eyes, told me I wouldn't be able to sleep until I took bipolar meds, but she tested me--wrongly. I was tested for a wheat allergy (and soy, etc). I didn't realize she hadn't actually tested me for celiac. I slunk back to my shrink thinking I was wrong, thinking my food issues where all in my head. I likely had some sort of IBS. I took the bipolar med, and it actually helped me sleep every night. I only took them because of that. My damn shrink would laugh and say I was his most stable bipolar patient, No s$#&, I'd always think. 

So back to present day. My GP did some blood work. My sodium and chloride were so low I could have had a seizure and gone into a coma at any moment (my bipolar meds can cause low sodium). My blood work was crap, low and high blood counts, my calcium is right on the low end of the reference range, and my cholesterol is 156 (I heard that's almost too low). I'm also very, very low in Vitamin D and my B-12 was a low normal, whatever that means. My TSH was fine, but my T4, Free was .1 lower than the reference range. Apparently that's okay and I don't have a thyroid problem (YAY!). I also don't have diabetes (YAY!). In follow-up blood work, I didn't have signs of peri-menopause (YAY!). However, my blood count was even worse (low RBC and hemocrit, nearly low Hemoglobin, high MCV and MCH), I don't think my doc believed me when I said I eat healthy. :( I told my doc about the FODMAP diet before one of my appointments.I'd been on it and lactaid for 2-3 weeks and began keeping a food/stool/sleep diary. I got lots more familiar with my poop. :P TMI: mine tends to be really light brown with shades of yellow and green, also a Bristol Type 1. It has always floated ever since I can remember. Also, my intestinal gas gets horrible the more vegetables I have (you can hear it across the room...it's embarrassing and painful). I already knew that, but it's documented now. :P It's not an "eat more vegetables" thing either. I'd been eating a cup of cooked veggies with every meal for around four months. My stomach just can't tolerate it. If I cook them and reduce veggies, it helps and I did reduce them in a fit of "I can't take this horrible intestinal gas anymore" rage. I mentioned celiac to my doctor, thinking it was possible I might have it (what with my mother's problems). I also just want piece of mind since I love bread and don't want to cut it out if I don't have to. She said she'd add that in with the next round of blood work. She also mentioned doing an ultrasound of my gallbladder, but I have no idea what for. She's been giving me B-12 shots every Friday for the last three weeks and I've been taking massive doses of Vitamin D since my first blood work came back in July. In any case, I started eating a couple of servings of bread every day for my celiac test, but I don't think I have it anymore. My stool turned a normal brown color (dark, dark brown) when I added bread back into my diet. It helped! Breakfast though, which was the only meal that DIDN'T give me horrible intestinal gas when I was eating gluten-free cereal and breads has begun to now. I think my problems lie with a combo of vegetables AND wheat and I think if I cut one out, I just reduce the amount of whatever is giving me problems. I know there's some absorption issues with those two food groups, but...wouldn't I have more diarrhea if that were the case? In point of fact, my random diarrhea has gotten a bit better since adding wheat back to my diet. It's not "real" diarrhea anymore. It's more like...oh, s$#&, gotta go NOW. But I don't have real diarrhea when I get to the bathroom. It comes out quick, but it's light brown and yellowish, ragged, but fairly solid. That's happened twice now like that. I used to get diarrhea for days at a times, sometimes it'd be almost liquid. 

The only thing that doesn't fit...after starting FODMAP, the tingling/falling asleep in my hands and feet got worse (probably lower B12). My left quad STOPPED falling asleep though for those two and a half weeks. Now that I'm eating wheat again, it's back even though the B12 shots have eliminated most of the problems in my hands and feet. Also, ten minutes after I ate wheat again...I got really, majorly dizzy. I crawled into bed and fell asleep soon after, so I don't know how long it lasted. I got mildly dizzy a few times in that first week but that went away. My GP said it was congestion. I wasn't congested though. :( Also, the second week, I had a migraine that lasted a few days and a mild one a day later (these are usually better when I'm eating healthy and reduced my wheat intake). After that, I got really sore like after a full-body lifting session even though I've been too tired/exhausted to work out for weeks. I started feeling short of breath a few days ago (which had gotten better while either on FODMAP or when I had the first B-12 shot, I can't remember). For the last two days, my breasts have been massively sore (but I'm not close to my period). Ugh, what's going on with me? Can anyone give me something to look up so I can ask at my next appointment. Or better yet, when I go to a gastroenterologist because I'm kind of done with my GP and made an appointment for one. My GP didn't even tell me to start eating gluten again when she said she'd test me for celiac (and I have no idea how much I should be eating and what my brief 2.5 weeks of FODMAP and reduced consumption of wheat before that means for the test). I don't think she knows much about stomach problems and wanted to push sleeping pills, IBS medication, and decongestants on me. I politely said no to covering up my symptoms.

I'm truly sorry for the ramble, but I'm exhausted, feel like s$#&, and I'm extremely grateful for any small bit of information anyone can offer. I've been going to the doctor since July and I feel like I've gotten no where. :(

ETA: Oh yeah, and apparently, I might have some intolerance to kiwi and eggplants, both of which I have eaten in the past. Also, the band-aids in the doctors office gave me a rash that lasted two weeks...twice. Now I refuse to let them put them on me. I feel like I'm becoming intolerant to everything now. :(

Edited by Ender

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Celiac.com Sponsor (A8):

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 I don't think she knows much about stomach problems and wanted to push sleeping pills, IBS medication, and decongestants on me. I politely said no to covering up my symptoms.

 

^^^this.  is what i went through for 25 years.  treating every symptom separately (yessss, i had all the pills ALL of them - i notice now there is a new drug out for 'IBS-D' that makes me scream at the tv "DO YOU MEAN CELIAC???!!!"  i'm sure if i wasn't already dx'd my doc would be running to the prescription pad...)  i've been treated for migraines, vertigo, allergies <i still have some that are seasonal) the dreaded "IBS" , colitis, loss of appetite <those pills are why they invented bed trays hahaha might as well just stay in bed they made me so doped up i couldn't take them but one day!)  i've passed out at home, passed out at a restaurant <scary!)  fatigue, the big 'D' and as a last ditch idea, my g.p. wanted to try One More Thing before they hospitalized me for malnutrition.  all my vitamins were tanked, as are yours, which is a pretty big indicator that your intestines aren't absorbing nutrients.  sooooo many things in your post have resonated as similar to my experiences, it WILL mess with your whole body, including your reproductive system (have had a miscarriage and other problems)  my blood test for celiac came back negative, because my dumb doc told me to try the diet prematurely (you should be consuming gluten before the test and i was not) but my GI declined to put me on a gluten challenge for the scope or to be retested because as soon as i stopped eating gluten, i began to regain weight (i was 5'8 97 lbs before i went on the gluten-free diet - i looked like a damb skeleton :(  )  eventually, following strictly gluten-free, the inflammation in my whole body went down and my symptoms started to disappear.  i even had a 'background headache' that i didn't realize i dealt with every day because pain was the 'norm'  - so, i didn't notice this headache until i woke up one day and it was gone.   please do keep an open mind that if this is, indeed celiac, it will change your quality of life for the better!  sure, it's an extra pain in the ass to eat carefully, but sooo worth it.  celiac is systemic, meaning that it affects your whole body (including neuorological symptoms!) so, you could be pleasantly surprised to have multiple (seemingly unrelated) symptoms to clear up after going gluten-free :) - if your doc is ruling out all this other stuff, (mine did the same) chances are you may have celiac.  like i said, your post is hauntingly familiar as far as ringing bells for me.  but i am not dr. google lolz

good luck and welcome to the forum.  we need more poop experts <totally cracked me up !  :D


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I think this sounds alot like lyme disease which i have had for the last 5 years and so has one of my sisters. We are both celiac but i also experienced numbness and tingling sensation,  constipation and diahreah  food allergies that i never had before and allergies to soap shampoo glue tape and different chemicals that never bothered me before  low b12  and d vitamin test and 6  years of messed up cbc's .also had aching joints fatigue. Lyme can be sexually transmitted as well as by fleas and mosquitos not just ticks and from mother to baby if the mother has lyme when she is pregnant. You alsi may not recall a tick bite and may not live in an area where lyme is common but the only place it isn't common is the north and south pole. I want to inform you that tested for lyme is flawed and only gets a positive result  30% of the time. There is a company in California called igenix that tests for the lyme DNA not the antibodies but you have to pay for it since it currently isn't covered under medical . Lyme is extremely controversial and you may have trouble finding a dr who will even test you. The fact that you said your dr wants to test your gallbladder i coukd really identify with because they removed mine before i knew i had Lyme.  I had horrible abdominal pain all the time and alot of the other symptoms you mentioned like migraines and i also couldn't even get out of bed for a whole summer. 

Here is a comprehensive list of Lyme symptoms 

http://canlyme.com/lyme-basics/symptoms/

 

Edited by Sue7171
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Sue, on this website if you make a claim about a health issue, you must back it up with scientific references. Your claims that lyme disease can be transmitted sexually, or by fleas and mosquitoes is totally false according to the CDC. Here is what they say about it:

Are there other ways to get Lyme disease? expanded

  • There is no evidence that Lyme disease is transmitted from person-to-person. For example, a person cannot get infected from touching, kissing, or having sex with a person who has Lyme disease.
  • Lyme disease acquired during pregnancy may lead to infection of the placenta and possible stillbirth; however, no negative effects on the fetus have been found when the mother receives appropriate antibiotic treatment. There are no reports of Lyme disease transmission from breast milk.
  • Although no cases of Lyme disease have been linked to blood transfusion, scientists have found that the Lyme disease bacteria can live in blood that is stored for donation. Individuals being treated for Lyme disease with an antibiotic should not donate blood. Individuals who have completed antibiotic treatment for Lyme disease may be considered as potential blood donors. Information on the current criteria for blood donation is available on the Red Cross website.
  • Although dogs and cats can get Lyme disease, there is no evidence that they spread the disease directly to their owners. However, pets can bring infected ticks into your home or yard. Consider protecting your pet, and possibly yourself, through the use of tick control products for animals.
  • You will not get Lyme disease from eating venison or squirrel meat, but in keeping with general food safety principles, always cook meat thoroughly. Note that hunting and dressing deer or squirrels may bring you into close contact with infected ticks.
  • There is no credible evidence that Lyme disease can be transmitted through air, food, water, or from the bites of mosquitoes, flies, fleas, or lice.
  • Ticks not known to transmit Lyme disease include Lone star ticks (Amblyomma americanum), the American dog tick (Dermacentor variabilis), the Rocky Mountain wood tick (Dermacentor andersoni), and the brown dog tick (Rhipicephalus sanguineus).

gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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This part caught my eye: "low RBC and hemocrit, nearly low Hemoglobin, high MCV and MCH"

It sounds like your results are showing a macrocytic anemia which your doctor is treating with B12 injections. It's great that your doctor is treating this (there are so many who don't). But I do wonder if your folate level was also checked? If you have low folate, the B12 shots will not be as effective as they should be. Low folate can also cause macrocytic anemia, but it would not cause the tingling (peripheral neuropathy) or memory issues that you mentioned. If you're having trouble absorbing nutrients (and it sounds like you are) then it would not be surprising if you were low in folate also.

I do wish you luck on getting to the bottom of the absorption problem. You could ask to be tested for Pernicious Anemia. That is another autoimmune condition. It can result in gastric atrophy which can make absorption of nutrients difficult. It usually also results in hypochlorhydria, which is low stomach acid. That can cause lots of IBS-type symptoms too.

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:D I think I figured out what a big part of my problem is!!! :D

I spare you all the big lead-up. I had an asthma attack on Sunday. I didn't know I had asthma. Good thing I waited until MONDAY to see my doctor after it had gotten so bad that I thought I might be having a heart attack, so bad that I wasn't sure I'd make it the short walk from the bus to the doctor's office (I was really lightheaded). At the appointment, I could only feel a small difference with the rescue inhaler. It took until the next day when suddenly I could breathe perfectly. Why do I think that happened? I'm fairly sure it was food allergies. I'll spare you the catalog of what I ate on Sunday and Monday, but I had another bout of mystery diarrhea on those days, so I felt like crap and ate very bland, very limited foods. I'm fairly sure the bulk of my improvement wasn't from the rescue inhaler (that's supposed to be immediate relief for 4-6 hours). I also slept much better and no part of me tingled, went numb, or fell asleep (not even close) over the last two days. I'm not exactly sure what food allergies I have though. I suspected either corn or soy, but I had neither yesterday and by the end of the day I began to have another reaction. 

In any case, the difference between my "old" normal and yesterday morning was so great that I finally realized that when I described what my shrink labeled hypomania nearly a decade ago, I was really just describing "days I can breathe." My shrink told me that I rapid-cycled, which basically meant that I was only breathing well a few days each week. It's gotten so bad that I don't even remember ever breathing well. In fact, it kind of overwhelmed me yesterday because I kind of felt like I got too much air. It's going to take some getting used to.

In any case, I'm kind of glad I have asthma. It should make it easier to ferret out what I'm having problems with.

Notme!: Ha, poop expert! That should have a theme song! I will keep an open mind about the celiac thing (I was tested on Monday, but I won't know the results until Friday. I'm fairly sure my symptoms are just a common collection of food allergies/intolerances at this point through. Thank you for telling me about your personal story. It was informative!

cyclinglady: Thanks for the links. I found some good information, especially about the celiac test. :)

Sue7171: I keep seeing stuff about Lyme when I google my symptoms. I looked it up after I read your post, but I don't think that fits what's going on with me, especially now with the asthma. Thanks for the info though as well as your personal story!

bartfull: Thanks for the other side of the Lyme argument. :)

Galixie, my doc didn't test my folate (I know, right). I read through some pernicious anemia stuff, but I'm not sure why my doctor hasn't said anything about it. I think she was waiting to see the effects of the B12 injections and vitamin D pills. Perhaps she expects my bloodwork to get much better, and if it doesn't, then she'll test my folate and talk to me about pernicious anemia? I really don't know.

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