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

Need Some Help...


curlingfan

Recommended Posts

curlingfan Newbie

Ok, basically I've felt not completely myself since sometime during freshman year of college. I'm in my senior year right now. Freshman year is also when I started to go vegetarian, which included me eating lots of fake meats which have lots of wheat in them. But anyway, I kind of isolated a lot of how I felt to hypolycemia. I would get lightheadedness and absolutely HAVE to eat otherwise I would feel sick.

But in the past few months I've read about Celiac and gluten sensitivity. These symptoms seem to have gotten worse in the past few months. The list of symptoms that I have that I feel are suspect are: sore joints, alopecia areata (diagnosed with a biopsy), low vitamin D, b12, and iron, yellowy smeary poop (gross, i know...), nausea, anxiety, BRAIN FOG, maybe the sebhorric dermatitis on my face. That's all I can think of right now. I kept wanting to make an appointment, but was running out of time and kept feeling bad, so I decided to just start the elimination diet. I've been gluten free for about 3-4 weeks now. I think I feel less nauseous and anxious, but the poop, brain fog, joints and hair don't seem any better.

My main questions are:

1) Was it wrong to start the diet without getting tested?

2) Do these symptoms sound like gluten sensitivity or celiac disease?

3) My aunt on my father's side had type 1 diabetes, and my aunt on my mother's side has fibromyalgia. Is this related to me?

and last, but certainly not least

4) The first 2-3 days of my elimination diet, my brain cleared up perfectly and I felt like myself again, my poop was brown and normal, and I couldn't feel my joints. I was sooo excited. Then after those 3 days (even now 3.5 weeks later) I still have all those problems. What gives? :( This is so frustrating.

Sorry for such a messy post, but I wanted to get all the info in. Thanks so much for the help in advance!


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



Celiac.com Sponsor (A8-M):



starrytrekchic Apprentice

When I started the diet, I felt better right about 2 1/2 days into it. That lasted for several days, then I felt horrible again. For me, how bad it was varied with my monthly cycle--no idea if your male or female, but if you're female, your sensitivity can change with your hormone levels. But I was also making some minor mistakes with the diet. You'll have to assume everything has gluten in it--even drinks--that you haven't thoroughly checked the ingredients. You'll have to make sure there's no cross contamination, that your hair/makeup/lotion/etc are all gluten free, that you're not getting it from any other source--handling pet food, kissing the SO after they've eaten gluten, etc.

You may also be experiencing other food allergies that pop up after you go on a gluten free diet, and you might simply be getting more sensitive to gluten.

I'm also veggie, and my problems also started in college. I also have brain fog, anxiety, fecal issues, nausea, anemia, and a sore joints.

I'm not an expert, but I think diabetes 1 can occur more often in celiac relatives/celiacs themselves. As to the diet--it depends on how much having an official diagnosis means to you. If you want to get tested later, you'll have to eat gluten everyday for several weeks.

curlingfan Newbie

When I started the diet, I felt better right about 2 1/2 days into it. That lasted for several days, then I felt horrible again. For me, how bad it was varied with my monthly cycle--no idea if your male or female, but if you're female, your sensitivity can change with your hormone levels. But I was also making some minor mistakes with the diet. You'll have to assume everything has gluten in it--even drinks--that you haven't thoroughly checked the ingredients. You'll have to make sure there's no cross contamination, that your hair/makeup/lotion/etc are all gluten free, that you're not getting it from any other source--handling pet food, kissing the SO after they've eaten gluten, etc.

You may also be experiencing other food allergies that pop up after you go on a gluten free diet, and you might simply be getting more sensitive to gluten.

I'm also veggie, and my problems also started in college. I also have brain fog, anxiety, fecal issues, nausea, anemia, and a sore joints.

I'm not an expert, but I think diabetes 1 can occur more often in celiac relatives/celiacs themselves. As to the diet--it depends on how much having an official diagnosis means to you. If you want to get tested later, you'll have to eat gluten everyday for several weeks.

Thanks for the response. I am male, btw. I sort of started getting a post nasal drip right around when I started going gluten free. I still have it, actually. So, I'm really hoping that's the reason for the fecal issues. By the way, I kiss my cat on his cute little lips all the time. :)

The weird thing is though, I never noticed being allergic to anything in my life, but a few days after going gluten free I tried to eat some pecans and it burned my tongue.

But yea, 2 days after going gluten free, I literally felt as good as I did when I was like 10 years old. It was so crazy. I don't think I have felt that good for over 10 years. Then, it came back :( So wierd.

Jestgar Rising Star

I kiss my cat on his cute little lips all the time. :)

Unless your wee beastie is gluten-free, he may be doing you in....

starrytrekchic Apprentice

Thanks for the response. I am male, btw. I sort of started getting a post nasal drip right around when I started going gluten free. I still have it, actually. So, I'm really hoping that's the reason for the fecal issues. By the way, I kiss my cat on his cute little lips all the time. :)

The weird thing is though, I never noticed being allergic to anything in my life, but a few days after going gluten free I tried to eat some pecans and it burned my tongue.

But yea, 2 days after going gluten free, I literally felt as good as I did when I was like 10 years old. It was so crazy. I don't think I have felt that good for over 10 years. Then, it came back :( So wierd.

You're probably getting more sensitive or making little mistakes. I'd investigate the cat thing. I like to kiss my little kittie all the time too, but I'm thinking I'm going to have to get her some different food. She eats Whiskas and it has 'Wheat Gluten' right there on the ingredients in large letters.

I don't know what's available gluten free for cats, though. And she has a sensitive stomach--and since Whiskas seems to work for her, I hesitate to try and switch her to something else.

Be sure you're washing your hands after handling your ball of fluff's food. I've glutened myself that way before.

You might try a journal--rating your symptoms 1-10 in severity--and see if they go down over time. It can be hard to judge objectively if your symptoms are better or worse than they were a week or month ago.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748

    Miyasato
    Newest Member
    Miyasato
    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

    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
    • knitty kitty
      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
×
×
  • 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.