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

Anyone Have Symptoms Get Worse In Cycles?

Emsstacey

Recommended Posts

Emsstacey Rookie
Emsstacey
Posted

I am wondering if anyone has "flare-ups" before getting a diagnosis?

My story is basically that I have had mouth sores my whole life, diarrhea, stomach/gas issues, ITP (low platelettes) and anemia from time to time. Several years ago I ended up with bad headaches and joint pain. At only 30 years old my hip showed beginning osteopenia and despite it being July when we are outside all the time, my vitamin D level was 16. The doc did a complete celiac panel and everything was normal except for one that read: gliadin antibodies, deamidated. It was 30-something. I can't remember exactly. When I asked about Celiac he said it wasn't convincing but I could go if I wanted to.

Prior to that, I had an EGD in 1999 looking for "malabsorption" but the doctor told me in recovery that it all looked good except for some gastritis. I'm wondering now if he even took any biopsies. I have called and am picking up the records as soon as I can get to the town he is in.

So... I had gone several months/almost a year without any mouth sores and was feeling pretty good. Now, my mouth sores are back, I can barely eat without terrible stomach issues and my joints/fatigue/headaches are back. Can I have celiac and have cycles where I feel somewhat better and then cycles where I feel much worse?

I am so frustrated because I have talked to my new family practitioner about being retested and everyone seems to just blow it off because I did not have a full positive panel... just the one. Plus, when it was run the DGP was unheard of. I'm assuming it was the DGP even though it didn't say peptide in it?

I'm just not sure where to go from here. It's so hard to stick to the diet without a diagnosis but i have little faith that I will get a doc interested enough to diagnose me. Anyone have advice for me?

Thank you!

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

I think the test you had is the most sensitive one there is. Someone will be along to correct me if I'm wrong, but on that test if it is positive at all then you are Celiac. Not every Dr. requires the biopsy to be positive if the blood tests are. You certainly have enough Celiac symptoms to warrant going gluten free with or without a diagnosis. Have you tried to be gluten free? Are the cycles/flares happening when you are on gluten? Many people have symptoms that come and go and change over a period of years before they either get diagnosed or realize that gluten is causing their symptoms. Celiac is called the Great Mimic for that reason. With changing symptoms and periods of flares and seeming remissions it is very difficult to diagnose. I couldn't get a doc interested enough to diagnose me either. But I'm staying gluten free for my life. Do you respond positively to the gluten free diet? Even when you go off of gluten you can still have flares or illness due to cc so it is very important to give it a good strict try. On the side of testing...Why couldn't you ask for a full Celiac Panel now if you have been eating gluten? Surely your Doc would have no reason to object to that. Though I know they do.

I'd say stay gluten free. But then I'm one of those who think gluten is bad for everyone not just Celiacs. Good luck and I hope you get some answers

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I am wondering if anyone has "flare-ups" before getting a diagnosis?

My story is basically that I have had mouth sores my whole life, diarrhea, stomach/gas issues, ITP (low platelettes) and anemia from time to time. Several years ago I ended up with bad headaches and joint pain. At only 30 years old my hip showed beginning osteopenia and despite it being July when we are outside all the time, my vitamin D level was 16. The doc did a complete celiac panel and everything was normal except for one that read: gliadin antibodies, deamidated. It was 30-something. I can't remember exactly. When I asked about Celiac he said it wasn't convincing but I could go if I wanted to.

Prior to that, I had an EGD in 1999 looking for "malabsorption" but the doctor told me in recovery that it all looked good except for some gastritis. I'm wondering now if he even took any biopsies. I have called and am picking up the records as soon as I can get to the town he is in.

So... I had gone several months/almost a year without any mouth sores and was feeling pretty good. Now, my mouth sores are back, I can barely eat without terrible stomach issues and my joints/fatigue/headaches are back. Can I have celiac and have cycles where I feel somewhat better and then cycles where I feel much worse?

I am so frustrated because I have talked to my new family practitioner about being retested and everyone seems to just blow it off because I did not have a full positive panel... just the one. Plus, when it was run the DGP was unheard of. I'm assuming it was the DGP even though it didn't say peptide in it?

I'm just not sure where to go from here. It's so hard to stick to the diet without a diagnosis but i have little faith that I will get a doc interested enough to diagnose me. Anyone have advice for me?

Thank you!

If you are still on gluten then get to another dr to get retested, ASAP. Your tests that were negative may be positive now. On a full gluten diet I too had periods of time where I felt better than others but my health got worse (new symptoms/problems developed) with each passing year.

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. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    3. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • 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.