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 Symptoms Question?


EmilyRD

Recommended Posts

EmilyRD Newbie

Hello all!

I am new to this whole posting thing, but I have been browsing this forum for a while as my GI symptoms appear to be consistent with Celiac. I was wondering if maybe someone can offer me some insight on what might be going on with my body! My history is as follows (sorry for the detailed descriptions): 1 year ago I was diagnosed with Hashimotos and they are still trying to regulate my thyroid levels; About the time I was diagnosed with Hashi's I began to lose weight (I think I have lost a total of 20 pounds in 1 year), and I have random bouts of diarrhea and constipation. I thought maybe this was related to my thyroid but now I am not so sure. Some of my stool has been oily and some actually float (once again sorry for the detail). I am a Registered Dieititan, so I was thinking maybe I am suffering from malabsorption and that is causing the weight loss? But it seems like there are some days that I eat and then go to the bathroom all day! And also even when I eat a large meal (or seamingly large for me) I am still starving afterward. It is the weirdest feeling, but it usually occurs after I eat something that's full of carbohdyrate. And sometimes accompanying my trips to the bathroom is a dull pain in my lower right abdomen.

Anyway I had the celiac panel done about 6 months ago, but the bood tests came back negative. I am still experiencing these symptoms but I was wondering if this is all normal GI stuff, or if it is something I should be concerned about. I have also read that there is a link between autoimmune thyroid disorders and celiac disease, which is further confirming that I might actually be suffering from this.

I appreciate any help you can offer me!!

Emily


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Hi Emily,

Welcome to the group! :)

I was diagnosed with Hashimoto's at the end of July. I was having ALL the symptoms you mentioned, plus I had lower abdominal pain that was so intense I had to stop whatever I was doing several times a day and comfort myself (it felt a lot like being in labor <_< ). I kept reading about connections between thyroid disorders and gluten, so after consulting with an allergist I thought... why not try the gluten-free diet? I noticed a difference within 48 hours.

My celiac panel also came back negative... maybe because I had already been off gluten for six weeks. Later I found out that I have the DQ8 gene, and then my mother was diagnosed with celiac disease. So... I'm pretty sure I have it! It explains soooo many things about my medical history. I started having symptoms of Hashimoto's when I was 17, but I thought the constipation, hair loss, feeling cold all the time, etc... was just "normal" for me.

The symptoms you're having are not normal... have you tried the gluten-free diet yet?

EmilyRD Newbie
Hi Emily,

Welcome to the group! :)

I was diagnosed with Hashimoto's at the end of July. I was having ALL the symptoms you mentioned, plus I had lower abdominal pain that was so intense I had to stop whatever I was doing several times a day and comfort myself (it felt a lot like being in labor <_< ). I kept reading about connections between thyroid disorders and gluten, so after consulting with an allergist I thought... why not try the gluten-free diet? I noticed a difference within 48 hours.

My celiac panel also came back negative... maybe because I had already been off gluten for six weeks. Later I found out that I have the DQ8 gene, and then my mother was diagnosed with celiac disease. So... I'm pretty sure I have it! It explains soooo many things about my medical history. I started having symptoms of Hashimoto's when I was 17, but I thought the constipation, hair loss, feeling cold all the time, etc... was just "normal" for me.

The symptoms you're having are not normal... have you tried the gluten-free diet yet?

Thank you for your reply! It is very comforting to know that my symptoms are not normal. I have not yet tried the gluten-free diet, but my only reason for doing this is because I know how expensive it is and I am afraid I would end up losing more weight :(. I realize that the majority of the food I eat contains gluten, so I would have to completely change my diet! But I am a Dietitian so it wouldn't be hard to do. I switched to a new Endo doctor this year, so maybe he can order the biopsy to be done to confirm if I actually have Celiac disease or not. Question for you though, did you have any problems with dry skin so bad it itches and itching/swelling hands?? Just a few more weirdo things going on with my body.

Thanks so much for the advice!!

Mother of Jibril Enthusiast
Thank you for your reply! It is very comforting to know that my symptoms are not normal. I have not yet tried the gluten-free diet, but my only reason for doing this is because I know how expensive it is and I am afraid I would end up losing more weight :(. I realize that the majority of the food I eat contains gluten, so I would have to completely change my diet! But I am a Dietitian so it wouldn't be hard to do. I switched to a new Endo doctor this year, so maybe he can order the biopsy to be done to confirm if I actually have Celiac disease or not. Question for you though, did you have any problems with dry skin so bad it itches and itching/swelling hands?? Just a few more weirdo things going on with my body.

Thanks so much for the advice!!

The gluten-free diet can be expensive if you buy a lot of the special substitutes (rice pasta, gluten-free cookies, gluten-free bread, etc...). I do a lot of cooking from scratch. I also figured out that I'm sensitive to corn, which is in EVERYTHING. Simple foods like meat, vegetables, fruit, nuts, seeds, etc... are a lot easier to control when it comes to cross-contamination. Plus they're pretty easy on the budget. I had to stop eating at restaurants too... that really saves a lot of money! If you're worried about losing weight there are plenty of high-calorie foods that can help: coconut, avocado, chocolate, nuts, pumpkin seeds, etc... One ounce of almonds has more than 500 calories. In the morning I like to have soy yogurt with sliced almonds, shredded coconut, sliced banana, and a little bit of pure maple syrup :P

On the dry skin issue... YES!! That has been a big problem for me. It's better now that I'm taking thyroid medication, but still noticeable. I have some theories about why that might be, since I also have chronically dry eyes, mouth, nose... <_< I have some appointments next month with an endocrinologist (finally), a rheumatologist, and a new gynecologist.

You might want to ask someone (maybe a dermatologist?) about the itching and swelling. Itching might just be from the dry skin, but I also have inflammation (redness, warmth, itching) on my face and scalp... another sign of my autoimmune problems. I've had SO many weird skin issues :ph34r: After I had been gluten-free for three months I started getting an itchy rash on my hands and arms when glutened myself. I never had that before.

ravenwoodglass Mentor

You could very well be one of us. Make sure you don't go gluten free before you have the endo done. There is a chance of a false negative even on a full gluten diet so you want to give it the best chance you can. Did they do a full celiac panel including a total IGA on you when they tested? A low total IGA will effect the test results and also result in a false negative. There are also some of us who just don't show positive on the blood tests. This includes some who were diagnosed by biopsy so after all the testing is done that you choose to have done do give the diet a good strict try.

As to it being expensive I have found I spend less than I did before I was diagnosed. I buy gluten-free bread, cracker, pretzels and the occasional cake mix but the savings from not buying all the convience foods I used to use evens out. I eat fresh or frozen single ingredient veggies and fruits, fresh meats and fish, beans and rice, potatoes etc. If you have a Wegmans near by they label all thier gluten free stuff in the regular foods so they make a trial easy, all you do is look for the G. It did take me awhile to get used to cooking most of my food but I soon realized that I could wrap some fish and veggies in foil and pop it in the oven and go sit and read the paper instead of rushing through a drive through or waiting for a delivery. A rice cooker is also a great appliance for us. You just put the rice in the bottom with water and then toss whatever in the steamer basket and your done.

The diet can be tough to get used to at first and during your trial it might be best to forgo using a lot of specialty stuff. One good reason for this is that many products may have ingredients that your body isn't used to consuming. Things like soy flour, lupine flour, bean flours, xanthan gum etc can be a problem if your not healed and your not used to them.

I hope you get some answers soon. You have come to a great place for info and support.

Oh as to the itching and swelling, you might want to check your hand lotions for wheat germ oil or oats in some form. If they are in there you may want to look for a different lotion and see if it makes a difference.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    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

    • Theresa2407
      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
×
×
  • 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.