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

Feel Like I'm Going Crazy

pikkulintu

Recommended Posts

pikkulintu Rookie
pikkulintu
Posted

This is probably going to be a long post (and a first post at that) but I feel like I'm going nuts.

The last few weeks I feel like my health is going down the toilet. I believe that I may have celiac disease but feel like I can't talk about my symptoms to anyone as they think it's all in my head. I began researching celiac symptoms due to recent events and I found that I have had alot of the symptoms throughout my life. Singularly they been diagnosed throughout the years as various things (vitamin D deficiency due to pregnancy, constipation due to pregnancy, lethargy due to stress of two kids and work etc) but never has celiac ever been mentioned and now it's like all the puzzle pieces have come together.

 

What led to all this is the last 2-3 months I have been suffering from the most horrendous, itchy rash that spread from my lower back/backside to all up my back, stomach, chest, upper arms, wrists, thighs and scalp. It is driving me crazy and starting to interfere with my daily life. I've never even had a rash before so this was completely out of the ordinary.

I had a complete random bout of conjunctivitis at the same time as this rash manifesting so toddled off to the docs to find out what was going on.

First doc diagnosed both the rash and conjunctivitis as a virus and said it would go away within a few days. It didn't.

Second doctor diagnosed it as bed bugs or scabies. I said if it was bed bugs why would I be sitting at my computer working with sudden random spots appearing on my wrists? And if it was scabies wouldn't my kids or husband have caught it by now? She agreed and doubted it was either but had no answers.

Third doc initially said scabies but doubted it was that and referred me to a dermatologist to be sure and said they would most likely do a biopsy (finally a bit of sense!). At the end of the consultation as an afterthought she asked if I had a wheat allergy. I told her no but have been experiencing severe hayfever symptoms the last 6 months or so and the rash seemed to get worse if I ate bread or pizza and she said wait to see what the dermo says ( appointment is in 2 weeks).

 

Since then I've researched and researched and lo and behold, I found my rash to look like that of dermatitis herpetiformus! Further reading led me to symptoms - some that I've had all my life and some developing within the last few years.

 

In a nutshell the symptoms I've experienced are:

- Runny/blocked nose

- excessive sneezing

- itchy mouth (near lips)

- itchy throat/nose/eyes/ears

- watery/irritated eyes

- severe constipation alternating with random diarrhea

- always fatigued/no motivation to do anything

- periods of feeling down and anxious for no reason

- memory loss (hubby claims to tell me stuff like appointments etc but I have no recollection)

- brain fog with trouble concentrating

- mood swings, grumpy for no reason

- keratosis pilaris all my life

- vitamin d deficiency

- low iron (especially during pregnancy)

- severe pain in shoulder for the last 6 months (get the results of an ultrasound in a couple of days)

- severe pain/weakness in wrist (xray showed nothing)

- severe pain/weakness in ankle (mri showed nothing)

- numbness/pins and needles in thigh (this started during pregnancy and was put down as the baby pressing on a nerve. It went away soon after the baby was born and then reappeared during my next pregnancy. Has recently come back within the last few months or so and I know I ain't pregnant.)

- pain when press on skin, particularly legs and arms

- bruise easily (just takes a poke on the leg and a bruise will appear)

- clicky joints

- very dry skin

- recent hair loss (hairdresser couldn't stop commenting on it, I'm like 'ok I get it!)

 

Back to the rash, I'd been trying to figure out why it always seemed to itch more in the shower. I read the ingredients list of my shampoo and conditioner and found it contained wheat! I also ate pizza a couple of weeks ago and oh my gosh I wanted to rip my skin off and scratch my bones! Talked briefly with my mum about my theory and she mentioned that an aunty who lived overseas (whom I've never met) is celiac so there's that too.

Hubby things I'm self diagnosing and that it's all in my head - he doesn't really want to know about it until a formal diagnosis. So I don't really feel like I have anyone to analyse this with until have this skin appointment. I know I have to keep eating gluten until the test is done so I've upped my intake of bread etc which is why I think I feel so crap lately. The last few days or so I've started getting abdominal cramps, loss of appetite, nausea, dizzy spells, want to sleep all the time.

 

I mentioned to hubby that if a diagnosis is negative (which knowing my luck probably will be) I think I'll still cut out gluten to which he said to me, 'well then it your LIFESTYLE choice and I don't want to hear about it.' That one hurt alot.

 

I think when I see my gp in a few days for my shoulder results, I'll ask her for the celiac blood test.

I apologise if this is so long and a bit disjointed and if you've stayed till the end - I thank you! I've been reading this forum alot the last week or so and it's really helped hearing other's stories - I've learned alot so thanks!

 

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

Celiac.com Sponsor (A8-M):


Jays911 Contributor
Jays911
Posted

Almost certainly celiac. Hang in there.

cyclinglady Grand Master
cyclinglady
Posted

Read our DH section. There is a lot of advice on getting tested. Those with DH often do not test positive on celiac blood tests, but you should start there. Then it is tricky finding a dermatologist who will take a biopsy adjacent to an active lesion. I do not suffer from DH, so please do some more research. Do not take any steroids (even topical). I hear that cold compresses help the itching.

Do not accept that this is "all in your head"!

Welcome to the forum!

celiac sharon Apprentice
celiac sharon
Posted

Pursue this like a demon and don't be swayed. I DO know how miserable DH is! I'm not sure about DH people not coming back positive on blood work. I am positive blood work and biopsy. But depression is also part of the picture so it's very easy to let people make you feel like you are over reacting when in reality, THEY don't want to be inconvenienced by your diet. Don't let this happen to you

mamaw Community Regular
mamaw
Posted

welcome.

 

You keep  fighting  for an answer, remember you know  your own body better  than any doctor... I've always  been told  that if  one gets a DH dx's  then no  additional testing  is  needed,  done  deal  the person needs to be  gluten free for  life, no  cheating.....

sorry about  hubby's  comment,  family  can be  horrible  at  times. hope  he  comes  around  to understanding  " it's  not  in your head"

I've  been  gluten-free  for twelve  years  & I was  so  unable  to function my husband  was  over  joyed to find  out  what  my problem was....he  has  been  my biggest  supporter  since,he  eats  gluten-free  & never  has  a bad  word to say  about the food.... he  sees  I now  am living not  being a  sickly  vegetable.......I pray  your  mate  will also  come  to terms...

Finding  a  doc  who will do  the correct  way  of  dx'ing  for  DH... Not  the lesion  itself  but  the clean  skin  beside a fresh lesion.That  will be  hard....

hugs

pikkulintu Rookie
pikkulintu
Posted
  • Author

Thank you everyone for your responses and the warm welcome. There is such a wealth of information on these forums that it really makes one feel not alone :)

Knowing that it probably is celiac but having to keep eating gluten until the biopsy in two weeks is the current hurdle but hopefully there is light at the end of the tunnel. Ate some potato pancakes that had flour in them with dinner last night and sure enough my rash started itching like crazy and decided to spread further up my chest :S Will def be browsing the DH section.

 

I'm glad that I found out the biopsy has to be taken adjacent to the lesion and not on the actual lesion itself. I don't want the dermo to think I'm telling her how to do her job but at the end of the day it's my health and if the procedure is done incorrectly well I'm back to square one.

I think hubby is one of those people that needs me to have a formal diagnosis for him to take it seriously so I hope he comes around soon. At least I have the forums now to vent to and analyse :)

If I test positive I want to get my kiddies tested too. Does anyone know what age is appropriate for kids to be tested? My oldest is 4 1/2 and youngest is 2 1/2.

 

Thanks again everyone :)

mamaw Community Regular
mamaw
Posted

you are  right  some  people  need  that  golden  result  from  a  medical professional...that  is okay  .. And  we all hope  his  doubts   will end  & he  will become  a  understanding  , helpful,  man  that  I'm  sure you will love even  more!!!

 

Siblings,  parents,  children all should be  tested  as  soon as  you get  your dx's......the full celiac  panel....and  every few  years( I like 1 or 2)  after that  if  they  were  negative....

Just  a  footnote:  it  is  very hard for many people family & friends  to  put  their  head  around  food  can  make  a  person  ill, after all we  all were raised  to believe wheat is the staff of  life!!!! heck, even  some  celiac  people  can not  understand....so  don't  be  to hard  on  any of them... Being gluten free  is  a  journey to a  healthy lifestyle, I do not  think of it  as a diet....

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748
    Brianman
    Newest Member
    Brianman
    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

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...