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

Frustrated At 5 Months...

Light

Recommended Posts

Light Rookie
Light
Posted

To recap--my celiac disease test results were negative... My PCP thought the Gluten-free diet might be worth trying anyway... Several weeks after going Gluten-free my worst symptom (confusion) improved by maybe 50-75%. The improvement was palpable and I was certain I was on my way to recovery. Despite religiously adhering to the diet. for the past 6 weeks I've felt like I am almost back to square one. I do have the occasional good day, or days when the onset of the confusion is much later in the day--but I also have horrendous days in which the confusion/agitation is there almost the entire day.

1. Should I be doing better at five months? Is it normal to have setbacks spanning weeks this far out?

2. I just saw a new neurologist and based on my symptoms she thinks that I have celiac disease even though my results were negative. I am not willing to do the biopsy... Should I ask for genetic testing?

3. Finally, I've noticed that my nasal congestion is vastly improved--maybe the best it's ever been... Could this be a result of going Gluten-free?

Thanks in advance for your encouragement and insights,

Mike

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

Celiac.com Sponsor (A8-M):


mimommy Contributor
mimommy
Posted
To recap--my celiac disease test results were negative... My PCP thought the Gluten-free diet might be worth trying anyway... Several weeks after going Gluten-free my worst symptom (confusion) improved by maybe 50-75%. The improvement was palpable and I was certain I was on my way to recovery. Despite religiously adhering to the diet. for the past 6 weeks I've felt like I am almost back to square one. I do have the occasional good day, or days when the onset of the confusion is much later in the day--but I also have horrendous days in which the confusion/agitation is there almost the entire day.

1. Should I be doing better at five months? Is it normal to have setbacks spanning weeks this far out?

2. I just saw a new neurologist and based on my symptoms she thinks that I have celiac disease even though my results were negative. I am not willing to do the biopsy... Should I ask for genetic testing?

3. Finally, I've noticed that my nasal congestion is vastly improved--maybe the best it's ever been... Could this be a result of going Gluten-free?

Thanks in advance for your encouragement and insights,

Mike

Hi there. Your post is interesting to me for a variety of reasons. Alhough I may not be able to offer the insight that other more experienced members will, I know that there are many here who can help. For myself, I will be watching this post eagerly for my own reasons. I have found in my own research that neurologic symptoms can be related to celiac and gluten, including those in MS. Yes, the biopsy is scary, as it invoves general anesthesia, but be aware that your insurance probably won't cover genetic testing.

Speaking to your question regarding nasal congestion, I realised when I read this that my daughter has seen vast improvement with the same type of symptoms since going gluten free--I hadn't paid attention to it until you pointed it out. She had a constant "stuffy nose" from toddlerhood through age 8. I have been so intently focused on the other issues, I failed to see that she does not constantly sniffle any more. Thank you for posting.

Gfresh404 Enthusiast
Gfresh404
Posted
To recap--my celiac disease test results were negative... My PCP thought the Gluten-free diet might be worth trying anyway... Several weeks after going Gluten-free my worst symptom (confusion) improved by maybe 50-75%. The improvement was palpable and I was certain I was on my way to recovery. Despite religiously adhering to the diet. for the past 6 weeks I've felt like I am almost back to square one. I do have the occasional good day, or days when the onset of the confusion is much later in the day--but I also have horrendous days in which the confusion/agitation is there almost the entire day.

1. Should I be doing better at five months? Is it normal to have setbacks spanning weeks this far out?

2. I just saw a new neurologist and based on my symptoms she thinks that I have celiac disease even though my results were negative. I am not willing to do the biopsy... Should I ask for genetic testing?

3. Finally, I've noticed that my nasal congestion is vastly improved--maybe the best it's ever been... Could this be a result of going Gluten-free?

Thanks in advance for your encouragement and insights,

Mike

1. Everyone is different and takes different amounts of time to heal. But if you saw an initial improvement that quickly, I'd say gluten in sneaking in somewhere. I would double check everything and even make sure the stuff you are eating is not made on shared lines of wheat/gluten ingredients. If you are unsure or it does not say, call the manufacturer to find or and don't even risk it.

2. I would, that way you have a better way of knowing whether it's even possible you have celiac. As for the biopsy, I had one and did not tell me anything and since you are already gluten free there really would be no point anyway. The positive diet response is the best indicator imo.

3. Absolutely, the symptoms of celiac are side vastly and widely ranging it's amazing. I belief that is mainly because if you are consuming gluten, your immune system is putting out antibodies to deal with what it thinks are intruders. Thus, your immune system is weakened any unable to focus on other tasks, ie sinuses.

ang1e0251 Contributor
ang1e0251
Posted

1. Should I be doing better at five months? Is it normal to have setbacks spanning weeks this far out?

People have reported setbacks like yours. I would say it's pretty common from what I have read. It usually turns out to be "sneaky" gluten, other sensitivities or an illness like flu.

Sneaky gluten is gluten that's sneaking into your diet from an unexpected source. Maybe from a supplement, pet food, cc or exposure to construction. There are many possibilities.

Other sensitivites could be for example dairy which many folks have. You can cut the dairy from your diet for a few days and probably tell if this is the culprit.

3. Finally, I've noticed that my nasal congestion is vastly improved--maybe the best it's ever been... Could this be a result of going Gluten-free?

My nasal congestion has greatly improved since going gluten-free. I very rarely now take meds for it. Before I medicated 24-7.

It's surprising the symptoms that can be linked to celiac disease. Give it more time and you will be feeling better than ever. If you think your problem is sneaky gluten and you can't pinpoint it, give us an idea of your diet and someone should have some ideas for you.

Light Rookie
Light
Posted
  • Author

Thanks everyone for your thoughtful replies. The only thing new I've added to my diet recently has been homemade lentil soup. Seems pretty safe to me but I'll be calling the company to see what they have to say...

I have an email in to my doctor about the genetic testing for celiac and doing more general tests to look for other causes of my confusion.

I have to say it again. My sinuses are phenomenal. It's hard to believe. I've had allergies my whole life and I don't know that my nose has ever been this clear.

Thanks again for your insight form the trenches...

-Mike

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
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. 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...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    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

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • 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    
×
×
  • 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.