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

Is This Intolerance?

hoopshype

Recommended Posts

hoopshype Newbie
hoopshype
Posted

Hello guys,

I found this website online and I registered. With so many people suffering from intolerances I thought this could be of great help to me.

I have been suffering from various symptoms for the last 3 years and only now some have become increasingly unbearable.

I have done a CT of the brain (negative), thyroid and Hormones(negative), I've done heart EKG,ECHO, Stress test (Negative), I've done several Ultrasound viewings of my lower and upper abdomen (negative), I was positive for Gastric Acid and small Ulcers in the stomach. I've thousands of blood tests and everything turns out perfect. More than perfect, doctors say it could not be better. But I am still suffering and it seems no one understands me.

I also have a dislocated jaw which gives me great discomfort and nose deformation which doctors say gives me a chronic sore throat.

Let me start by listing my symptoms:

I have headaches very often, it feels like my brain is going to explode. These are not common headaches but tension headaches.

Dizziness and Confusion

Tongue Feels weird sometimes numb or cold.

Occasional ear noise or ache.

Face discomfort (made worse when in Sunlight)

Lymphatic nods enlarged

Occasional breathing difficulties

Numbness or tingling in feet or hands

Occasional chest pain

Now the fun part: All of these items come and go away at times... expect for the fatigue and weakness...

I'm almost certain that some food or group of foods is causing this. I have IBS, gasses and a weird faeces (kinda Oily). I'm rarely constipated or suffering from diarrhea, i rarely feel nauseous.

Any ideas?

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Have you had any allergy testing?

Oh...and welcome! :)

hoopshype Newbie
hoopshype
Posted
  • Author

Have you had any allergy testing?

Oh...and welcome! :)

Thanks.

Yep I've had an allergy testing for 60 different things. Negative

Chiana Apprentice
Chiana
Posted

Have you had any allergy testing?

Oh...and welcome! :)

I second those statements! Though, in addition, did they check to see if it was an H. Pylori infection causing the ulcers? Also, have you had your b-12 levels checked?

Marilyn R Community Regular
Marilyn R
Posted

Numbness or tingling in feet or hands

Yes! There are neurological effects for 1/10th of the people who cannot tolerate gluten according to what I've read. I'm one of them, and I have permanent nerve damage (polyneuropathy) because I never associated my problems with gluten. (I changed soaps and shampoos all the time hoping to find the answer to all of that tingling.)

I'm not saying that you do or do not have an intolerance, I'm just sharing my experience. There are some vitamin deficiencies that can cause those sensations too.

Good luck to you, wish you the best.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Did you have a celiac bloodwork panel done?

I had mos tof those symptoms you listed except the jaw and nose thing...had constant sinus infection though and migrain headaches. You want to get all your bloodwork done before going gluten-free, otherwise you would have to go back to gluten later to test. The neurological symptoms do go away slower than the GI symptoms and many people with neuro symptoms are blood/biopsy test negative. So regardless of test results you should trial the diet for several months of strict gluten-free. Or you could do an elimination diet to start out and cut out all major allergens/any foods you suspect.

hoopshype Newbie
hoopshype
Posted
  • Author

I second those statements! Though, in addition, did they check to see if it was an H. Pylori infection causing the ulcers? Also, have you had your b-12 levels checked?

I believe I've been checked for vitamins and minerals

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

Celiac.com Sponsor (A8-M):


hoopshype Newbie
hoopshype
Posted
  • Author

Did you have a celiac bloodwork panel done?

I had mos tof those symptoms you listed except the jaw and nose thing...had constant sinus infection though and migrain headaches. You want to get all your bloodwork done before going gluten-free, otherwise you would have to go back to gluten later to test. The neurological symptoms do go away slower than the GI symptoms and many people with neuro symptoms are blood/biopsy test negative. So regardless of test results you should trial the diet for several months of strict gluten-free. Or you could do an elimination diet to start out and cut out all major allergens/any foods you suspect.

What are the bloodwork panels for intolerances? Including lactose, gluten, fructose and yeast I believe are the main ones? I live in a not so developed country and I doubt the availability of such tests. You guys have been through this and you know better than anyone about the tests needed.

suziq0805 Enthusiast
suziq0805
Posted

Did you have a celiac bloodwork panel done?

I had mos tof those symptoms you listed except the jaw and nose thing...had constant sinus infection though and migrain headaches. You want to get all your bloodwork done before going gluten-free, otherwise you would have to go back to gluten later to test. The neurological symptoms do go away slower than the GI symptoms and many people with neuro symptoms are blood/biopsy test negative. So regardless of test results you should trial the diet for several months of strict gluten-free. Or you could do an elimination diet to start out and cut out all major allergens/any foods you suspect.

Not trying to steal the thread here....but you mentioned that people with neuro symptoms have negative bloodwork for celiac. Do you happen to have any info to back that up that I could take to my doctor with me? I've tested negative and do have the neuro symptoms.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

What are the bloodwork panels for intolerances? Including lactose, gluten, fructose and yeast I believe are the main ones? I live in a not so developed country and I doubt the availability of such tests. You guys have been through this and you know better than anyone about the tests needed.

I don't know if there are ones for fructose, yeast or lactose. They do a breath test I beleive for lactose--but that is even hard to get in the US I think.

There is not reallya blood test for gltuen intolerence. There are test for Celiac. From what I understand-- currently if you don't test positve for celiac but you have a positive response to the diet you might be diagnosed as "gluten intolerant". Some people however have been able to get positive celiac diagnosis based on genetic testing and response to diet. This link lists the blood tests: Open Original Shared Link Take it with you to the dr to make sure you can get as many of the celiac panel tests as you can. Some drs will only do one but it is better to do them all to get a full picture of what is going on. Again these could all be negative and then you would try the diet and see if your symptoms go away.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Not trying to steal the thread here....but you mentioned that people with neuro symptoms have negative bloodwork for celiac. Do you happen to have any info to back that up that I could take to my doctor with me? I've tested negative and do have the neuro symptoms.

Sorry I don't have any links for you. I'm basing my staement on people's experiences I have read here. Perhaps someone else can giv eyou some research. Reasearch and testing is still in it's infancy, however compared to many other diseases. IMO, they will come up with a different way to test for neurological based celiac in the future and may even name it something else. Have you tried the diet to see if it helps your symptoms?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,179
    • Most Online (within 30 mins)
      7,748
    Diane McD
    Newest Member
    Diane McD
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "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 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine 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. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 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 Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...