Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Requesting Advice

healthy-dreamer

Recommended Posts

healthy-dreamer Newbie
healthy-dreamer
Posted

Hi everyone. I've been struggling with various symptoms for a while now and have been driving myself crazy worrying about all the possible diseases I could have. Just recently I read an article about celiacs disease, and it felt like the pieces fell into place. I'm just hoping for a little advice as to whether my symptoms really do fit, or if I'm just thinking wishfully.

I'm in my late 20's, but for my whole life I've suffered from loose stool (not what I'd consider diarrhea, but sometimes close). I've never really thought anything of it, because it's always been that way, and there were never any other symptoms like bloating or pain). I've also suffered on and off from bad breath.

About 5 years ago after a trip to Mexico where I was sick with a flu and very stuffed up I developed a persistant nasal drip and blocked ears (I can hear a sticky sound when I yawn and swallow). This became quite a nuisance requiring regular throat clearing. I was sure it came about from when I was sick, but my doctor dismissed and treated it as allergies, diagnosing nasal spays - these didn't really help, so I just lived with it.

More recently in the last 6-12 months I started to get a strange tingling / gushing sensation in both my feet. Within the last 3 months I decided to try a dairy free diet for my nasal drip, but instead of getting better, I started getting a hard to describe light-headed or foggy (not sure if that's the right word) sensation that comes and goes to varying degrees, lasting anywhere from hours to days at a time. The doctor didn't offer any help, although I've had bloodwork done for diabetes, LFT, calcium deficiency, CBC, and a couple of other things I can't remember. My LFT came back with elevated levels (I wasn't told any specifics), and will be going back for another blood test in a couple of weeks to see if they have returned to normal. I've also more recently been waking in the morning with pins and needles / dead arms, as though I've been sleeping on them, but I always wake up like this lying on my back and turning on my side quickly resolves the 'deadness'. I'm also slightly shakey in my fingers, and generally feel like my nerves are out of wack.

My biggest fear was MS, but after reading up on it, I'm almost certain my symptoms don't quite fit, as the pins and needles don't come on randomly, and seem to affect both sides of my body equally. My doctor hasn't even mentioned celiac's disease, but it seems to me to fit many of the symptoms quite well.

I've already started avoiding gluten because at this point I feel like I need to take action, although after reading a few posts I know many of you will suggest I get tested, so I'm considering starting to eat gluten again and asking my doctor to do the full slew of tests. My doctor didn't even test me for B12 or vitimin D defficiency, and I'm wondering if I should request these as well, in case I'm not absorbing them properly (hence my nerve issues).

Thanks for taking the time to read my woes, and I look forward to any further insights and advice any of you can give me.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


SMDBill Apprentice
SMDBill
Posted

Wow, your symptoms are very similar to mine, particulary the sinus problem. I did not even know it was related until I had gone gluten-free for a bit. I started to notice I no longer had severe post nasal drip, worst in the morning, followed by it constantly throughout the day which required throat clearing nearly every minute. When I realized I had stopped doing it, I think I had been gluten-free for a week or two. It was just gone and I felt like my sinuses were finally dry. While I had the symptoms, I could hear like a popping/crackling in my ears sometimes as well, similar to when you have a sinus infection that is pretty severe. When I got glutened, the symptoms returned. Not as heavily as before because it was an isolated event, but I had the drip and throat clearing return and knew immediately it was from the gluten.

The light headedness/brain fog could just be a gluten reaction and not related to the dairy. I'm lactose intolerant so I mostly avoid milk, although it is an ingredient in some things I eat. I can apparently tolerate very small amounts, but large amounts are quite different. The brain fog left when I went gluten-free and returned after glutened. I also experience tingling/weakness in muscles, but mine are in my arms, mostly my forearms on top. Those muscles still hurt some after glutening going on 2 weeks ago so apparently muscle pain is my last symptom to go after ingesting gluten.

I hope you do find a positive answer, but if you get no satisfaction from a doctor and go gluten-free on your own, the feeling of better, worse or no change will be the biggest clue into what's wrong. I'm already gluten-free and will be tested Monday, or setup for testing, and will then know which vitamins I am deficient in. Best of luck to you and don't hesitate to ask more. We all seem to have varying symptoms so there's always someone around who has felt like you may be feeling.

GFinDC Veteran
GFinDC
Posted

Hi,

It is a good idea to get your vitamins and mineral levels tested. For the celiac antibody testing it is important to keep eating gluten right through the testing. After all the testing is done you can go gluten-free right away. It is also a good idea to write down your symptoms before you go to the doctor so you don't forget to tell them something.

Takala Enthusiast
Takala
Posted

Get a full celiac blood panel run.

Be aware that some of us with neurological symptoms don't test out easily to confirm. After testing, stick with the gluten free diet since you are having a good response, and you should be able to avoid the complications of long term nerve damage. If your doctor is not responsive to your requests, find another one, if he/she is, search the internet for Dr. Hadjivassiliou's Pub Med and other articles online, if they need to be coaxed into understanding that celiac/gluten intolerance can show up this way.

1desperateladysaved Proficient
1desperateladysaved
Posted

Hi everyone. I've been struggling with various symptoms for a while now and have been driving myself crazy worrying about all the possible diseases I could have. Just recently I read an article about celiacs disease, and it felt like the pieces fell into place. I'm just hoping for a little advice as to whether my symptoms really do fit, or if I'm just thinking wishfully.

I'm in my late 20's, but for my whole life I've suffered from loose stool (not what I'd consider diarrhea, but sometimes close). I've never really thought anything of it, because it's always been that way, and there were never any other symptoms like bloating or pain). I've also suffered on and off from bad breath.

About 5 years ago after a trip to Mexico where I was sick with a flu and very stuffed up I developed a persistant nasal drip and blocked ears (I can hear a sticky sound when I yawn and swallow). This became quite a nuisance requiring regular throat clearing. I was sure it came about from when I was sick, but my doctor dismissed and treated it as allergies, diagnosing nasal spays - these didn't really help, so I just lived with it.

More recently in the last 6-12 months I started to get a strange tingling / gushing sensation in both my feet. Within the last 3 months I decided to try a dairy free diet for my nasal drip, but instead of getting better, I started getting a hard to describe light-headed or foggy (not sure if that's the right word) sensation that comes and goes to varying degrees, lasting anywhere from hours to days at a time. The doctor didn't offer any help, although I've had bloodwork done for diabetes, LFT, calcium deficiency, CBC, and a couple of other things I can't remember. My LFT came back with elevated levels (I wasn't told any specifics), and will be going back for another blood test in a couple of weeks to see if they have returned to normal. I've also more recently been waking in the morning with pins and needles / dead arms, as though I've been sleeping on them, but I always wake up like this lying on my back and turning on my side quickly resolves the 'deadness'. I'm also slightly shakey in my fingers, and generally feel like my nerves are out of wack.

My biggest fear was MS, but after reading up on it, I'm almost certain my symptoms don't quite fit, as the pins and needles don't come on randomly, and seem to affect both sides of my body equally. My doctor hasn't even mentioned celiac's disease, but it seems to me to fit many of the symptoms quite well.

I've already started avoiding gluten because at this point I feel like I need to take action, although after reading a few posts I know many of you will suggest I get tested, so I'm considering starting to eat gluten again and asking my doctor to do the full slew of tests. My doctor didn't even test me for B12 or vitimin D defficiency, and I'm wondering if I should request these as well, in case I'm not absorbing them properly (hence my nerve issues).

Thanks for taking the time to read my woes, and I look forward to any further insights and advice any of you can give me.

I think you should be checked for parasites. In Mexico you could have picked some up. If you do have celiac, you could be more susceptible to them. I think they can cause some congestion and illness . I think it a good idea to consider celiac.

healthy-dreamer Newbie
healthy-dreamer
Posted
  • Author

So I just came from a visit with my GP, and he completely dismissed the possibility of it being Celiac. He said I would have diarrhea, bloating, stomach pain and blood in my stool and that my symptoms would be much more severe. He even said loose stool is perfectly healthy in many cases. Instead he thinks all my symptoms are caused by anxiety (I really don't generally feel anxious, although all these symptoms aren't helping!). He refused to even humour me with running a celiac blood panel, and the only thing he would add to my upcoming blood test was for B12. Very frustrating to say the least.

At this stage I think I'm going to try gluten free for at least a couple of months and see how I feel. Wish me luck!

tom Contributor
tom
Posted

Ugh, another Dr thinking celiac symptoms fit in one tiny specific box, while we know they can be all over the map.

Good luck w/ getting relief from gluten-free, whether celiac or not. Remember that simpler, whole foods are better for us than highly-processed gluten-free substitutes.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748
    Eric bell
    Newest Member
    Eric bell
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...