Day 41, Symptoms Worsening

[Raywuwei]

Today is my 41st day being gluten free. My symptoms had been up and down, but I'm now officially in a rut and feeling frustrated. I was one of the Celiacs who "didn't have symptoms" before getting diagnosed, but I think I just didn't know what was abnormal. Anyway, now that I know the root cause of my morning bathroom issues (I get D not C) but I am curious about some other issues I have.

Does anyone else faint easily? I've had a few fainting spells in my life, usually due to hot weather or standing up too quickly after waking up from a deep sleep. But I just moved from the Pacific Northwest to NYC and the heat this week is really getting to me. I know that I am malnourished (my tTG levels were <200) but I feel like I'm MUCH weaker than everyone else. I haven't left my apartment without my boyfriend in a few days, and even when he is with me he gets concerned. Is this a celiac thing?? I just started taking CeliAct multivitamins on Friday and I hope they will eventually help, but in the mean time I'm not sure what to do.

I also bruise really easily. Is this a common symptom of celiac malnutrition? They do heal pretty quickly now that I am taking the multivitamins, mostly within 4 days.

Finally, I feel like I've developed over-active bladder symptom. I'm drinking a fair amount of water since it is so hot out, and since it helps the body to heal from gluten damage, but I don't think it is enough to merit my sudden and dire need to pee. I share an apartment with 3 guys and the bathroom is often occupied, so I just sit in the living-room squirming with frustration! Is this something any other newly gluten-free people have noticed? Is it harder to absorb liquid when you cut out whole grains? I've been doing well about supplementing fiber, but maybe I should do the flaxseed thing?

Much thanks to anyone who reads this. I don't have health insurance until September so I am kind of going this alone right now, which is pretty scary in a new city.

[Razzle Dazzle Brazell]

Today is my 41st day being gluten free. My symptoms had been up and down, but I'm now officially in a rut and feeling frustrated. I was one of the Celiacs who "didn't have symptoms" before getting diagnosed, but I think I just didn't know what was abnormal. Anyway, now that I know the root cause of my morning bathroom issues (I get D not C) but I am curious about some other issues I have.

Does anyone else faint easily? I've had a few fainting spells in my life, usually due to hot weather or standing up too quickly after waking up from a deep sleep. But I just moved from the Pacific Northwest to NYC and the heat this week is really getting to me. I know that I am malnourished (my tTG levels were <200) but I feel like I'm MUCH weaker than everyone else. I haven't left my apartment without my boyfriend in a few days, and even when he is with me he gets concerned. Is this a celiac thing?? I just started taking CeliAct multivitamins on Friday and I hope they will eventually help, but in the mean time I'm not sure what to

I also bruise really easily. Is this a common symptom of celiac malnutrition? They do heal pretty quickly now that I am taking the multivitamins, mostly within 4 days.

Finally, I feel like I've developed over-active bladder symptom. I'm drinking a fair amount of water since it is so hot out, and since it helps the body to heal from gluten damage, but I don't think it is enough to merit my sudden and dire need to pee. I share an apartment with 3 guys and the bathroom is often occupied, so I just sit in the living-room squirming with frustration! Is this something any other newly gluten-free people have noticed? Is it harder to absorb liquid when you cut out whole grains? I've been doing well about supplementing fiber, but maybe I should do the flaxseed thing?

Much thanks to anyone who reads this. I don't have health insurance until September so I am kind of going this alone right now, which is pretty scary in a new city.

Hey I just wanted to toss in my two cents. It is common to have anemia from malabsorption but it is important to know how bad and what kind of anemia (iron deficiency or pernicious anemia). Trying to treat it without knowing could be dangerous with iron. B12 is very easy to get. I myself have pernicious anemia. I was already taking small dose of iron at time of testing and my Nutrition Doctor put me on sublingual B12 drops. It helps me with fatigue too.

Touching your bladder urgency, I have interstitial cystitis but it is virtually non-existent when I am months into a gluten low diet. Bladder problems are actually getting some recognition as a symptom of food sensitivities now. You can take some AZO tablets, decrease caffeine and spices and other harsh irritants. I think this symptom will go away with some time. If you havent got a copy of you blood levels though all this is kind of a stab in the dark. If you got your levels check post the info here and everyone will be more than happy to help. By the way I also dont have insurance so this has been a crazy ride for me as well. To get my nutrition level labs done I went to QuestDiagnostics and it was only $150. It is a lot but it got me back on the way to feeling much better. I cant work if I am that ill so it was something that paid me back.

[1desperateladysaved]

I also bruise really easily. Is this a common symptom of celiac malnutrition? They do heal pretty quickly now that I am taking the multivitamins, mostly within 4 days.

Finally, I feel like I've developed over-active bladder symptom. I'm drinking a fair amount of water since it is so hot out, and since it helps the body to heal from gluten damage, but I don't think it is enough to merit my sudden and dire need to pee

I did notice before I went gluten free that I often had little bruises appear without known cause. I believe it shows one is low in Vitamin K.

I had bladder issues like sudden severe burning at times. My MD wanted to have a tube stuck up there to see if my bladder was irritated. I told her it was irritated and that was that. If you are recently gluten free your body may be cleaning out and the bladder doesn't like gluten. I found a list of bladder irritants on the internet.

tomatoes

citrus fruits and juices

chocolate

sugar or honey

spicy food

carbonated drinks (yikes root beer)

caffeinated drinks

alcohol

arificial sweetener

None of them mentioned gluten, but my bladder has been at peace with me since I went gluten free. Well, crystalized ginger causes some burning issues. My bladder has sometimes put out high volumes, but without the irritation.

I hope your problems will resolve and or the bathroom will be open when you need it.

[lovegrov]

I'd be looking for other causes for the problems you're describing. These are NOT common celiac symptoms.

richard

[ravenwoodglass]

You are living with 3 guys. Is this house a gluten free house? If not how careful is everyone to not cross contaminate you? Do you have your own toaster, strainers for gluten-free pasta and rinsing fruits and veggies, your own condiments, nut butters etc? If you BF is not gluten free does he brush is teeth before you guys kiss? Are you eating mostly whole unprocessed foods with little or no restaurant items for now?

There should be sliding fee scale clinics somewhere near you to get things checked out. The fainting and weakness should be checked out to make sure something else is not going on.

[Simona19]

As I understand your weakness started when you moved to the warmer climate.

There are many common things that can be wrong:

- its warmer and your body perspire more which is causing dehydration. You need to increase fluid.

- with warm weather some people will have higher blood pressure. It can make you dizzy. Our body will try to lower it by forcing us to urinate more (to loose blood/ fluid volume and lower the pressure) .

- if you are constantly tired, you might drink more tea, or coffee to pick you up, but they are diuretics which can explain your freak went urination (watermelon will make you to go often to).

- by going gluten free you eliminated junk food from your diet. The junk food is usually very salty. Now that you are eating less of it, you might have low blood pressure which can cause dizziness.

- also, if you stop eating sweets, this can be another reason why you might have low blood pressure. I saw The Dr. Oz show once where he was explaining why people have high cholesterol and high blood pressure. I forgot his explanation, but I remembered the culprit - sugar. Higher amounts of sugar in our diet will raise cholesterol and blood pressure. I told this to my mom, the heavy Sprite drinker, and she eliminated it immediately from her diet. Now, she is taking only a half of pill- the lowest strength (sometimes not even that) because she don't need it.

- you might have problem with build up fluid behind your ear drum which can cause vertigo- type of dizziness. The different between dizziness caused by low blood pressure and vertigo is this: with vertigo when you will close your eyes, you will feel, like everything around you is moving - bed, chair, floor and with other dizziness when you close your eyes, you will be dizzy.Or

You might have something like this:

Open Original Shared Link

Open Original Shared Link The video on the bottom of page is shoving the worse case.

You can have mild version, or very strong. I'm somewhere in middle which isn't fun, but I'm lucky in a way because I'm not fainting all the time like others. I'm having pre-syncope instead.

The hot weather will knock me right out. I will walk like a zombie. My POTS is post-viral and I hope that with the help of pills it will be manageable.

Check the symptoms.

One advice: When you feel dizzy, drink 1 bottle of water at once. If you will feel better after 10-15 minutes, you have problem with low blood pressure, or dehydration. Try to eat something salty and drink more water (or Gatorade- it has 160 mg of salt) to increase your fluid volume in your body.

As others sad, the dizziness must be checked by a doctor, but POTS is a new disease and only few doctors know about it. Doctors might know about orthostatic intolerance, not POTS. I saw many doctors and had many tests in a past (2,5 years) until I found the right one in New York at Columbia University Hospital, Dr. Weimer at the Neuro institute.

I hope that you will feel better soon.

[archaeo in FL]

Hello Raywuwei,

I am new here, just diagnosed a couple of weeks ago, but can't see my doctor until August - so I'm just doing the best I can until then. Very little guidance on the "diet" from them so far.

Before I recognized increasing and severe fatigue (from which my GP found anemia, B, D, C, and calcium deficiencies, and was smart enough to do a preliminary test for Celiac before referring me to a GI doc), I felt like I had a UTI for *months*. My mom has Interstitial Cystitis (IC), but after multiple visits to a urologist and no diagnosis, he started just trying me on things - first meds for overactive bladder (don't help), then meds for IC (don't help). He wanted to put me on a TENS device - at which point I switched to a Uro-GYN. Her preliminary thought was endometriosis with bladder involvement, but instead of finding out, she had me get a Mirena (there aren't really treatments for endo, except some hormonal stuff like the IUD or attempting to excise it if necessary). I have a follow up with her next week.

Since I started seeing her, I reintroduced all of the "IC" no-no foods (tomatoes, vinegar, alcohol, tea) and haven't noticed any difference, so I don't think that's the problem. (Readers, I know caffeine is a diuretic and that it can increase the urge to go - I drink one cup first thing in the morning, and the problem is there regardless of whether I have it or not.)

I have been gluten-free for about two weeks, and the constant feeling of having to go hasn't really gotten better. It was come-and-go before, and it's about the same. It's worse when I lay down, and it might be worse after eating sugar. My next questions involve testing my hormones, thyroid, and blood sugar - all of those, I've read, can cause bladder complications. Of course, it makes sense that gluten may be a part, but I have been very careful about what I eat - almost all produce, cleaned, processed, and cooked by me. But maybe there is some damage there (that the urologist didn't see? - my bladder was scoped) that has to heal, I don't know.

Please have your vitamin levels tested. If you are severely anemic or severely vitamin deficient in other areas you may have long term complications if this continues for a while. You should be able to leave your apartment! (That said, being from Florida, extreme heat can very hard for those not used to it - sit in front of a fan and keep a cool damp handkerchief with you to try to keep your body temperature down.)

Hope you feel better soon.

[Raywuwei]

One advice: When you feel dizzy, drink 1 bottle of water at once. If you will feel better after 10-15 minutes, you have problem with low blood pressure, or dehydration. Try to eat something salty and drink more water (or Gatorade- it has 160 mg of salt) to increase your fluid volume in your body.

Thank you, I will pay close attention to this! And thanks for the other information as well. I will get myself check out soon

[Raywuwei]

You are living with 3 guys. Is this house a gluten free house? If not how careful is everyone to not cross contaminate you? Do you have your own toaster, strainers for gluten-free pasta and rinsing fruits and veggies, your own condiments, nut butters etc? If you BF is not gluten free does he brush is teeth before you guys kiss? Are you eating mostly whole unprocessed foods with little or no restaurant items for now?

There should be sliding fee scale clinics somewhere near you to get things checked out. The fainting and weakness should be checked out to make sure something else is not going on.

My boyfriend is very careful, but I did sit down with him last night before posting this and asked his thoughts on how strict we were being. I've been eating a few things without extensively checking the label for hidden gluten (like Haagen Daz mint chocolate chip ice cream) so there is a good chance I am glutening myself. My step brother is a bartender and an avid beer drinker, so there are often half full glasses of beer strewn about. I'm not sure if/how the gluten radiates from beer, but its not something I can avoid at this time. I don't use the cutting board, but I have been straining my gluten-free pasta in the communal colander :/ I'm a grad student in NYC and I just can't be that strict at this time, but I will definitely research local clinics. Thanks for your help!

[Raywuwei]

(Readers, I know caffeine is a diuretic and that it can increase the urge to go - I drink one cup first thing in the morning, and the problem is there regardless of whether I have it or not.)

I have been gluten-free for about two weeks, and the constant feeling of having to go hasn't really gotten better. It was come-and-go before, and it's about the same. It's worse when I lay down, and it might be worse after eating sugar. My next questions involve testing my hormones, thyroid, and blood sugar - all of those, I've read, can cause bladder complications.

I agree with you about the coffee/caffeine. I'm from Portland, OR where coffee is KING. I've removed it from my diet many times and it never makes a difference, though reducing from my once normal daily amount of 32oz down to 12-16oz definitely did help my stomach pains.

I am thinking this is a blood sugar issue. My boyfriend suggests that as the culprit every time but for some reason I haven't asked a doctor. (He also suggested for years that I had a wheat allergy and I never took it seriously!)

Thanks for your kind thoughts!

[Razzle Dazzle Brazell]

I agree with you about the coffee/caffeine. I'm from Portland, OR where coffee is KING. I've removed it from my diet many times and it never makes a difference, though reducing from my once normal daily amount of 32oz down to 12-16oz definitely did help my stomach pains.

I am thinking this is a blood sugar issue. My boyfriend suggests that as the culprit every time but for some reason I haven't asked a doctor. (He also suggested for years that I had a wheat allergy and I never took it seriously!)

Thanks for your kind thoughts!

Well if you think that may be it. A cheap option is to buy one of those no code blood sugar monitors at a drug store. It would seem blood sugar would be more obvious than other things because the effects of hig carbs and high sugar or going too long without eating. Is that consistant with your experience?