Jump to content

  • 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

Another Boring Plea! But I Am So Upset!

MGR

Recommended Posts

MGR Apprentice
MGR
Posted

Hi lovely people, I have been a member of this forum for a while now, but I have never really introduced myself!! I have had symptoms of various kinds nearly all my life, but I thought that this just how I am! Being constantly tired, etc is part of my personality.

I am in Scotland and here the knowledge about celiac is not much better as in many places and I find myself in a most ridiculous situation as I still don't know whether I am officially celiac or not! Here the system works in that one sees a different person every time one goes to the GI specialist and even at times one has to go to the GP to get blood results, have a chat, etc.... In my case there seems to be a discrepancy of opinion... As I had been gluten free for two months prior to this diagnosis journey- I was told to go on a gluten challenge, there was also disagreement as to how long, depending on who I saw.... But I settled for 8 weeks and went for my endoscopy appointment bare being able to stand on my feet as I had a terrible reaction to gluten-I also get DH and I had an enormous concentration of blisters around my mouth and inside... And a small concentration at the back of my legs.... Th endoscopist was very alarmed at my general state! Together with the nurses , he saw mild scallopings in my intestine and said: your symptoms together with what I've seen I am confident that you have celiac- they also did a blood test and took biopsies. Of course, both were negative! I asked which blod test they had performed and I found out that they had done only one, the TTG IgA which sees whether you produce antibodies or not... My GP was adamant, negative blood test no celiac, but if you feel better you can go gluten-free- just cut out wheat, you can still eat barley, etc.... Lol

Letter back from GI specialist, negative biopsy - no evidence of celiac... E funny thing is that I've been a patient for 20 years in the same department as I have ulcerative colitis- it is a well know fact that individuals with certain autoimmune diseases do not produce these IgA antibodies and Erefore it is not surprising my blood was negative as I am deficient ... Signs of deficiency: constant mucosal infections: sinusitis, colds, bladder, etc... Nobody ever looks at your records carefully ... As also the type of colitis I have has been linked to celiac. Nobody ever asks any questions- my grannie had RA and horrendous digestion, my uncle has DH and RA..... How can they make a negative diagnosis based on one single, test without looking at everything else - or what happened to the other three tests? I was told by my endoscopist to go gluten-free ASAP!! And now I have been gluten-free for 2 months, so when I confront my GI in April are they going to tell me to go on another challenge?

I would be very interested to hear from other fellow people who have both ulcerative colitis and celiac?

Thanks so much

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If you have DH you have celiac.  Has your DH been diagnosed by a dermatologist? If so there is no doubt you have celiac disease.

1desperateladysaved Proficient
1desperateladysaved
Posted

Greetings MGR,

 

Welcome!  I think I have seen your pretty flower around

 

First a question, How do you know you have DH?  Is it officially diagnosed.  I see RW beat me to saying so, but if it is you have celiac!  The sightings during the biopsy would back it up.  I don't know, though how the final outcome of the biopsy was negative.  I would ask the one that did the biopsy again, and make sure you got your own results. 

 

I hope you will soon not have the fatigue companion,

 

D

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Doctors can be really clueless and extremely frustrating.  From what you describe it sure as heck sounds like you either have Celiac or non-Celiac-gluten-intollerance.  Either way, if it were me I would go 100% gluten-free (not just wheat free as that one doc suggested) and see if the symptoms go away.  If they do, there's your answer - and I would never look back.

MGR Apprentice
MGR
Posted
  • Author

As regards to the DH no, it has never been diagnosed formally - I just started getting the burning, yellowish/ red rush that looks like watery bubbles on the back of my legs, sometimes around and inside and around my genital area, other times around my scull since I've had my first daughter- I always assumed it was some sort of odd looking chicken pocks. The mouth rush I've had all my life, but I never linked any of this to celiac until I went on my gluten challenge and all he'll was loose!! One of my first signs when I have had gluten is that the burning bubbles start to appear. Whenever I mention this the doctored don't seem to be interested. However, I don't get it too badly, but the reason I feel it is DH is that I compared it with my uncle's rush and it looks very similar....

With regards to my negative biopsy, I don't know either... I've also had a friend where the endoscopist saw severe damage to her villi and both her biopsy and blood were negative- and she also had ulcerative colitis. Hence, vy original question.

I also get horrendous gastric issues ( foul smelling wind, D, yellow olive oil smelling poo), brain fog and this horrendous tiredness, joint pain... Constant feeling like I'm coming down with flu any minute... In sum, I am a wreck!!

I have now been gluten-free for two months and after years of gastric problems, also with my colitis I realised that the whole of my gut was on fire!! Everything has stopped now.... And it looks like everything is slowly recovering.

MGR Apprentice
MGR
Posted
  • Author

Doctors can be really clueless and extremely frustrating.  From what you describe it sure as heck sounds like you either have Celiac or non-Celiac-gluten-intollerance.  Either way, if it were me I would go 100% gluten-free (not just wheat free as that one doc suggested) and see if the symptoms go away.  If they do, there's your answer - and I would never look back.

I know, it is very clear to me that there is something going on with gluten- I feel soo much better without it, i am still learning as I keep glutening myself accidentally and immediately the symptoms appear...

MGR Apprentice
MGR
Posted
  • Author

Greetings MGR,

 

Welcome!  I think I have seen your pretty flower around

 

First a question, How do you know you have DH?  Is it officially diagnosed.  I see RW beat me to saying so, but if it is you have celiac!  The sightings during the biopsy would back it up.  I don't know, though how the final outcome of the biopsy was negative.  I would ask the one that did the biopsy again, and make sure you got your own results. 

 

I hope you will soon not have the fatigue companion,

 

D

Thanks to the flower compliments, my daughter made it for me.... Unfortunately, how the system works in Scotland, it is highly unlikely I will meet this endoscopist again as one never meets the same person twice, sometimes it is a good thing but at other times it is not... I will just have to nag the one I get the next time..

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

From what I have read, a lot of folks who have DH get negative results on the biopsy. If you feel you absolutely must have a diagnosis, you should get a skin biopsy. They need to take the sample on CLEAR skin right next to an ACTIVE lesion.

 

You also said it looks like your uncle's rash. Has HE been diagnosed with DH? Because DH DOES mean celiac, and celiac runs in families. If he has it, odds are you do too based on family history and your symptoms.

 

If you don't care whether you have an official diagnosis, just go gluten-free. I'm sure you have read the Newbie 101 thread already, but review it and if you have any questions, ask away. Also, go to the DH section. You will get a wealth of good information there.

MGR Apprentice
MGR
Posted
  • Author

From what I have read, a lot of folks who have DH get negative results on the biopsy. If you feel you absolutely must have a diagnosis, you should get a skin biopsy. They need to take the sample on CLEAR skin right next to an ACTIVE lesion.

You also said it looks like your uncle's rash. Has HE been diagnosed with DH? Because DH DOES mean celiac, and celiac runs in families. If he has it, odds are you do too based on family history and your symptoms.

If you don't care whether you have an official diagnosis, just go gluten-free. I'm sure you have read the Newbie 101 thread already, but review it and if you have any questions, ask away. Also, go to the DH section. You will get a wealth of good information there.

Thanks, very much for the info, I thought I had also read something about negative results for individuals with DH, but wasn't certain... Yes, my uncle has been diagnosed- I don't think I will have a biopsy because I would have to eat gluten for them to appear .... I've already done one gluten challenge, I am not doing a second one! I will just wait for the day they develop better methods for diagnosis....

F

anti-soprano Apprentice
anti-soprano
Posted

Hi-

Here are some links on DH for your docs, if you care to educate them...or for your Uncle and other family members.

 

Open Original Shared Link

This one states that an intestinal biopsy is unnecessary if DH is confirmed with biopsy.

 

Open Original Shared Link

This one states that only about 40% of people with DH test positive with the blood test.

 

Gluten Challenge research:

layman link:Open Original Shared Link

medical link:Open Original Shared Link

 

According to the info above, your docs put you through a lot of unnecessary pain with an 8 week gluten challenge.  The above links both reference the same research outlined in the medical link, which say 2 weeks of gluten and then testing at 4 weeks gives the best results and you need not drown yourself in gluten in order to get results.  However, the research used only diagnosed celiacs and only 75% were "re-diagnosed" after the challenge.  It's just not very effective.  I'm glad to hear you say you're not doing it again!

 

Best of luck and happy healing to you!!

Shellie

MGR Apprentice
MGR
Posted
  • Author

Oh, I am so grateful you all of you who took the time to answer my plea, this would explain a lot, Shellie.. As I mentioned above, the endoscopist saw scallopings ( even though mild, but they are still there) .... I will have to make a fuss about my skin rash the next time I see the doctor. In the meantime I feel soo much better gluten free.

Because I keep glutening myself accidentally with foods I think are gluten free or stupidly thinking I will be fine...., I have now been 5 days on an exclusion diet- paleo style- but only having protein based foods at the moment. I read somewhere on this forum how great is was (I think it was either in a post by bartful or w8atdave...). I will introduce other foods gradually after this. But today was the first time I thought " I feel like climbing Mount Kilimanjaro!" At last, tummy not on fire, UC quiet, joints sore but bearable... This is all thanks to this forum- where I have found people with similar pleas to mine, all learning together, thanks to all of you for sharing your stories!

I am extremely fortunate my family is very supportive and I loooove cooking- but I now have a big sign on my kitchen cupboard saying ALWAYS READ THE LABEL!!

Love to all of you, ( you can tell I am a sixtie's child....)

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. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that...
    2. RMJ
      - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
    3. knitty kitty
      - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed...
    4. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

      @tiffanygosci, Hello. I apologize for your thread being hijacked. I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain. My cycle returned early after I had my...
    5. trents
      - trents replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.