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

Getting tested

Toni Morrissey
 Share
Go to solution Solved by trents,

Recommended Posts

Toni Morrissey Newbie
Toni Morrissey
Posted

My doctor is treating me for indigestion. We are early in the process after symptoms developed two months ago including bloating, stomach ache, headaches, both constipation and diarrhea, burping, fatigue etc. My daughter has celiac so I was tested 15-20 years ago. It was negative. Is it possible for me to develop later in life? How do I convince my doctor to test me? She doesn’t know yet about my daughter because I ruled it out because negative tests. I’m just miserable and so tired of being sick every day. Thanks for your help and advice.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Solution
trents Grand Master
trents
  • Solution
Posted
27 minutes ago, Toni Morrissey said:

My doctor is treating me for indigestion. We are early in the process after symptoms developed two months ago including bloating, stomach ache, headaches, both constipation and diarrhea, burping, fatigue etc. My daughter has celiac so I was tested 15-20 years ago. It was negative. Is it possible for me to develop later in life? How do I convince my doctor to test me? She doesn’t know yet about my daughter because I ruled it out because negative tests. I’m just miserable and so tired of being sick every day. Thanks for your help and advice.

It is absolutely possible to develop celiac disease later in life. celiac disease requires the genes but it also requires a triggering stress event, such as a viral infection, to turn the genes on.

Link to comment
Share on other sites
Wheatwacked Veteran
Wheatwacked
Posted

My son was diagnosed in 1976. I was in denial until 2014.  I had it all my life, but the symptoms I had were not gastro related, so was never considered.

 

Link to comment
Share on other sites
Toni Morrissey Newbie
Toni Morrissey
  • Author
Posted
3 minutes ago, Wheatwacked said:

My son was diagnosed in 1976. I was in denial until 2014.  I had it all my life, but the symptoms I had were not gastro related, so was never considered.

 

 

3 minutes ago, Wheatwacked said:

My son was diagnosed in 1976. I was in denial until 2014.  I had it all my life, but the symptoms I had were not gastro related, so was never considered.

 

What were your symptoms?

Link to comment
Share on other sites
Wheatwacked Veteran
Wheatwacked
Posted

lifetime congested sinuses, prostate hypertrophy at 21, skinniest kid in school, sleep apnea, fibromyalgia, arthritis, foot neurapathy, never ending Seasonal affective disorder, had 35 pounds of bellyfat.  I got dumber from 3rd grade on. Brain fog. Back then I had a list of 19 that improved just as a result of GFD. Later I tracked my food intakes and discovered malnutrion because of my anorexia. I would, and actually still do, put off eating because I never knew if I would be better or worse after the meal. No one believes this but I became an alcoholic in 1984 when I got a thing for buttered hard rolls.  That went away the week I started GFD.

Link to comment
Share on other sites
Sof Apprentice
Sof
Posted
7 hours ago, Wheatwacked said:

lifetime congested sinuses, prostate hypertrophy at 21, skinniest kid in school, sleep apnea, fibromyalgia, arthritis, foot neurapathy, never ending Seasonal affective disorder, had 35 pounds of bellyfat.  I got dumber from 3rd grade on. Brain fog. Back then I had a list of 19 that improved just as a result of GFD. Later I tracked my food intakes and discovered malnutrion because of my anorexia. I would, and actually still do, put off eating because I never knew if I would be better or worse after the meal. No one believes this but I became an alcoholic in 1984 when I got a thing for buttered hard rolls.  That went away the week I started GFD.

Hi!!

 

Did the food neuropathy go away after quitting gluten? Mine is improving but still there. 
 

Link to comment
Share on other sites
Wheatwacked Veteran
Wheatwacked
Posted

Did you mean 'foot' ?.  That has been a long journey. Started with plantar faciitis, which I dealt with by hot showers down my back with shallow knee bends and gentle stretching.  Part of the problem with PL is tightness of the Achilles Tendon.

Even after gluten free then started the numbness, leathery skin, burning cold feet, etc. Kind of weird but the cramps would start only after sleeping on my side for 2 hours.  A sheet of Nori (42 mcg iodine) helped with the dry foot skin. My feet sweated more as they got colder until middle age.  Apparently we stop sweating to preserve iodine. Toes turned up and ankle turned down. I could walk it off, but it returned.  Magnesium oxide did not help.  2 ounces of cherry flavor liquid magnesium citrate (580 mg elemental Mg) in 20 ounces of water has been reversing it almost in the reverse order the problems started. Unlike other Mg pills it absorbs very quickly.  A 10 ounce bottle runs between $2 to $4.  The whole bottle is the dosage for contipation and clearing the colon for colonoscopy and such.  Low potassium and calcium intake could also be involved.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Sof Apprentice
Sof
Posted
12 minutes ago, Wheatwacked said:

Did you mean 'foot' ?.  That has been a long journey. Started with plantar faciitis, which I dealt with by hot showers down my back with shallow knee bends and gentle stretching.  Part of the problem with PL is tightness of the Achilles Tendon.

Even after gluten free then started the numbness, leathery skin, burning cold feet, etc. Kind of weird but the cramps would start only after sleeping on my side for 2 hours.  A sheet of Nori (42 mcg iodine) helped with the dry foot skin. My feet sweated more as they got colder until middle age.  Apparently we stop sweating to preserve iodine. Toes turned up and ankle turned down. I could walk it off, but it returned.  Magnesium oxide did not help.  2 ounces of cherry flavor liquid magnesium citrate (580 mg elemental Mg) in 20 ounces of water has been reversing it almost in the reverse order the problems started. Unlike other Mg pills it absorbs very quickly.  A 10 ounce bottle runs between $2 to $4.  The whole bottle is the dosage for contipation and clearing the colon for colonoscopy and such.  Low potassium and calcium intake could also be involved.

Yes, I meant foot, thank you for your answer!

Link to comment
Share on other sites
Wheatwacked Veteran
Wheatwacked
Posted

Welcome

 

Link to comment
Share on other sites
LindaW Newbie
LindaW
Posted

I developed Celiac Disease in my 50s!  You can most certainly get this later in life, just like allergies.  I have GERD so I am on daily med for that.  But when the doctor told me I would have to reintroduce gluten into my diet prior to testing I said no way!  I'm not satisfied with the accuracy of the blood testing.  So what I do is assume I have it, and go gluten free, 

Link to comment
Share on other sites
Toni Morrissey Newbie
Toni Morrissey
  • Author
Posted
26 minutes ago, LindaW said:

I developed Celiac Disease in my 50s!  You can most certainly get this later in life, just like allergies.  I have GERD so I am on daily med for that.  But when the doctor told me I would have to reintroduce gluten into my diet prior to testing I said no way!  I'm not satisfied with the accuracy of the blood testing.  So what I do is assume I have it, and go gluten free, 

 

Thanks, Linda. I can’t wait for the diagnosis journey to be over.

Link to comment
Share on other sites
NotEllen Newbie
NotEllen
Posted

I just got diagnosed at 68 years old, though I've probably had it for a couple of years. My mother had Celiac Disease and Dermatitis Herpetiformis, so I knew there was a chance I would get it. I was tested 25 years ago and was negative and thought that meant I was in the clear for life. I was surprised to learn that it can develop at any age. 

Link to comment
Share on other sites
cristiana Veteran
cristiana
Posted

My consultant diagnosed someone in their 90s a few years ago! 

Link to comment
Share on other sites
cristiana Veteran
cristiana
Posted (edited)
25 minutes ago, NotEllen said:

I was surprised to learn that it can develop at any age

My nephew has type 1 diabetes and is tested for Coeliac routinely, I think every three years.   I was surprised when I heard this was routine testing was required as like you I thought once tested negative, always negative, but seemingly not.  Apparently up to 1 in 10 type 1 diabetics are coeliacs.

https://www.diabetes.org.uk/guide-to-diabetes/enjoy-food/eating-with-diabetes/managing-other-medical-conditions/coeliac-disease-diabetes#:~:text=Coeliac disease is more common,isn't an autoimmune condition. 

Edited by cristiana
Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      124,669
    • Most Online (within 30 mins)
      7,748
    Phillus Maximus
    Newest Member
    Phillus Maximus
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Extreme bloating even gluten-free

      By Wheatwacked · Posted

    • Wheatwacked
      Extreme bloating even gluten-free

      By Wheatwacked · Posted

      Welcome hilly and Schellee94, and JulieF.      There is more to recovering from Celiac Disease than simply not eating wheat, barley, rye products. Ceilac malabsorption syndrome causes us to not absorb the nutrients we eat, so we imperceptively slip into malnutrition.   Children recover quickly.  Adults can take years because of unidentified vitamin and mineral deficiencies.  Top of the list is vitamin D, then Thiamine, then Choline, and Iodine. I, too, like Dr. Hyman.  Also Dr Davis (Wheatbelly) and Dr Amen.  While promoting gluten free, they are not dealing with the level of deficiencies brought on by the autoimmune malnutrition that comes with celiac disease.  You do not need a cleaning, Celiac has done that for you.  You do need agressive vitamin and mineral replenishment.  Those promoting cleanses do not take into account the malabsorption /malnutrition of celiac disease.   It will make you worse.  Your gut biome is changing and without the opiod effects of gluten you are not being numbed.  But you are not getting the vitamin and minerals you need to heal.  It is way higher than the mininmum RDA.  That is the amount it takes for 98% of the HEALTHY population to not show signs of deficiencies.  Good for food service meal plans to keep costs in check.  Healing takes more than sufficient. These are the vitamins and minerals I have taken.  At this point I daily take vitamin D, Iodine and thiamin.  Choline I bounce between phosphatidyl choline capsules and when my anorexia allows lots of eggs and beef. Try supplementing vitamin D, Choline, Thiamine and Iodine, while also ensuring vitamin B2,3, 5, and 12 intake.  Get your folate from food, not folic acid. Reducing homocysteine (cardiovascular inflammation) uses a DV of 500,000 micrograms of Choline, versus only 2.4 micrograms of B12,  400 micrograms of Folate and 1,700 micrograms of B6.  Avoid all processed food until you heal. Gluten Free included.  Eat the foods we ate before TV Dinners. Use sugar or fruit for sweetness, not High Fructose Corn Syrup.  Sugar breaks into glucose straight to the mitochodria to create ATP energy.  No glucose = no energy.  Everything else has to be processed by and overwhelmed malfunctioning digestive system of Celiac Disease.   Since 1970 in the US we have switched to HFCS, )even Schwepp's Ginger Ale), took idodine out of dough conditioner, adopted the modern wheat and limited eggs and meats.  In return, 50% of the US are obese vs. 17% in 1970. Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri. Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom? Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash. Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS." Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.). I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since. Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine. Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.    
    • Julie F.
      Extreme bloating even gluten-free

      By Julie F. · Posted

      I have dealt with celiac disease for over 22 years. I was then positively diagnosed with a blood test. I was pregnant with my second child at the time. I eliminated wheat (barley, spelt, etc..) from my diet and as a side benefit, I noticed that the psoriasis on my ankles, elbows and knees had gone away after about a year. I made the connection that eating wheat had been causing my skin problems as well as abdominal issues. Turns out that they are both autoimmune diseases of which inflammation is a symptom. I also deal with dupuytren’s contracture. Not sure if there is a relationship there… am studying that one. Flash forward to near present time and menopause, my psoriasis was coming back even though I was careful in avoiding gluten. I did a bit of research and found new information on the relationship of gut health and autoimmune disorders.  Understanding that my symptoms were somehow food related, I decided to see an ND… Nature Pathic doctor and we did a gut zoom.  This is where they test a sample of your poop to see how healthy your gut biome is.  I was seriously lacking in certain key vitamins, healthy prebiotic factors as well as beneficial bacteria.  I followed an elimination diet and discovered a new sensitivity to corn by-products which I am now avoiding and I follow a regime of supplements and healthy diet (eating a rainbow of vegetables and organic if possible) to help me have a healthier gut biome. The psoriasis is reducing in size and I am feeling better. I am thinking that a gut zoom would be one of the first places to start for anyone dealing with celiac disease… it took me twenty years to figure it out.  I personally believe that factors contributing to my autoimmune issues are due mostly to what I was exposed to. My parents were heavy smokers and I was continually on antibiotics as a child because of ear, nose and throat infections. Antibiotics destroy a healthy gut environment. There is also information indicating that herbicides with glyphosate… that most US farmers use at harvest time (wheat, corn, soy, potatoes…) can be detrimental to gut health as well.   Interestingly, we inherit our own gut health from our mother’s womb before we are even born.  Is this part of the source of our genetic disposition for celiac and possibly other inflammatory diseases? I think that increasingly, more research will be done as medical professionals are making connections to gut health and immunity diseases… reading medical research papers has been challenging, but very helpful. I suggest using credible medical research papers and professional and government agencies when studying up on this relationship, don’t just take my word for it, but I did find the results from my gut zoom to be an invaluable resource.
    • Schellee94
      Extreme bloating even gluten-free

      By Schellee94 · Posted

      I'm having the same issues. Many things are causing extreme bloat. I'm dairy-free gluten-free and I also have to avoid sugar, quinoa, millet, teff, buckwheat, nightshades, alfalfa, all grasses, and chia hurts my joints. Canned garbanzo hurts me. Most beans hurt me. If I make lentils I soak and rinse several times and that makes them edible for me. I seem to be avoiding fresh garlic and onion as well fresh onion gives me a headache. I'm ok on corn, but not most soy. Rice is sort of ok. Then gluten free oats are ok if raw (not cooked, overnight oats are a good choice) . The list keeps growing and so does the bloat. I'm the same weight I was 2 years ago and much bigger in my arms and my belly and back. I'm looking at trying Dr Hyman's cleanse suggestions, and having a good amount of steamed cruciferous vegetables, as a mainstay for awhile. But it's pretty pricey for organic. I've been making my own bone broth but I cook it a lot longer so that I can get nutrients out of the bones not just the meat. This broth has helped me tremendously even though I would prefer not to have much meat it seems I really need it right now. I cannot eat pork it makes me feel poorly and I can't eat very much red meat for the same reason. If the eggs are raised properly I can eat the yolks and only sometimes eat the whites.  I hope this is helpful to highlight some triggers you might be experiencing yourself. There are some other posts here on the forum that highlight digestive enzymes and clean probiotics, as well as lectins. I'm going to look into that.
    • trents
      Extreme bloating even gluten-free

      By trents · Posted

      Some studies, with admittedly small sample sizes, show that about 50% of celiacs react to the protein casein in dairy the same way they do gluten. Can't find the NIH article I'm looking for but this one basically makes the point:   
×
×
  • Create New...