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Is It Celiacs Or Gluten Intolerance?

SOUPS

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SOUPS Newbie
SOUPS
Posted

For the past 5 years I have basically lost my ability to enjoy life. When I first became ill, I had no idea that it could be related to the food I was consuming.

After about 1 year of chronic constipation with frequent use of laxatives, itchy skin, muscle and joint pain, sensitivity to sound and light, depression, brain fog, dizziness/vertigo, loss of sex drive, some blurriness of vision, extremely foul smelling gas, and blotchy red bumps on my left arm that seem to get worse during one of my "episodes", and all of which are relieved upon using a suppository laxative and having a bowel movement, I ran into someone who has Celiac Disease. They explained it to me and I have been off and on the diet ever since, without any diagnosis from blood tests.

I am currently awaiting more blood results and the decision of an appeal with my insurance company (they won't allow me to get an Upper GI/Biopsy of my small intestine)... I did however test positive to 1 out of the 2 genes on the gene blood test, and have had two negative blood tests for gluten but am awaiting my third go around.

My thyroid levels are off, so I am currently on medication but was on synthroid in the past with no relief of symptoms, other than my weight went down about 20 lbs. I went off the medication, weight went up, now on a different type of thyroid med (Levosint) and have another test in about 3 weeks to test TSH.

So from your experience, looking at my symptoms, could it be Celiac disease or a gluten intolerance mixed with a thyroid condition?

Also, these symptoms have slowly worsened over time, starting with only constipation, then adding each other symptom slowly over the 5 years... What may have began as a thyroid condition has now ruined my life.

I am a long distance competitive runner, my mileage is suffering, my body weight has gone up, I am unable to recover after working out, I feel tired and sick all the time, it's putting a strain on my job, my marriage, my friendships, my family...

Need help.

Thank you for your time.

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Marlie Apprentice
Marlie
Posted

Did they run a full Celiac Panel? There are five tests in it. Its something to keep in mind because many people have posted results that are not a full Celiac Panel. Did you ever get relief from being 100% Gluten Free and check everything you eat as that can make a difference?

SOUPS Newbie
SOUPS
Posted
  • Author

Did they run a full Celiac Panel? There are five tests in it. Its something to keep in mind because many people have posted results that are not a full Celiac Panel. Did you ever get relief from being 100% Gluten Free and check everything you eat as that can make a difference?

I honestly am not not about whether or not it is the "full panel" or not, I will inquire on Wednesday's appointment.

I have yet to feel better but I have yet to be gluten free for a long period of time because everytime I go to a new doctor, they want me to eat gluten for weeks at a time before being tested. My current doctor has been the first to give me the gene test and he has been the 10th doctor I have seen since this all began.

zeta-lilly Apprentice
zeta-lilly
Posted

Yes, your symptoms are definitely consistent with gluten intolerance/celiac disease. Do the testing, but then try the diet regardless of what the tests say (but wait until you're done with testing). There are TONS of people on here who tested negative time and time again before they either tried the diet with success or finally had a positive test. So it's better to cover all your bases with a gluten free trial.

So from your experience, looking at my symptoms, could it be Celiac disease or a gluten intolerance mixed with a thyroid condition?

Thyroid disease is very commonly caused by gluten intolerance, and my thyroid labs actually improved after I went gluten free, so that could be caused by the antibodies from the glutne.

And this is my own soapbox and is irrelevant but personally, I'm a nurse and I don't really understand why physicians care about distinguishing between celiac disease and non-celiac gluten intolerance. The cause is the same, the treatment is the same, and there are so many body systems affected by both conditions that intestinal damage just seems like an arbitrary place to draw the line. To me, a disease which causes system-wide damage including the intestines is the same disease as one which causes system-wide damage but doesn't damage the intestines.

Hope this helps :-)

SOUPS Newbie
SOUPS
Posted
  • Author

Thank you for the reply, it was very informative. I have an appt. tomorrow to see the results of the blood test, I will have to get a copy of my gene and tomorrows blood test results so that I can examine them and post further information. I have a feeling my insurance may continue to deny the Upper GI and biopsy because I had an Upper GI done 2 years ago without a biopsy and they said that I can't get another for 5 years but I appealed the decision based on the biopsy not being done the prior time. Either way, I have already began the gluten free diet, I am now 2 days into being what I believe to be gluten-free. I had an episode today but am not sure if it was from artificial sweetner, caffeine, or an additional delayed reaction from gluten. My chest began hurting, severe stomach cramping, and very intense body pains, like all my bones felt like they were about to snap. I immediately took a benadryl and 2 Tylenol and feel somewhat better. I didn't have the usual "glutened" feeling, this was somewhat different which leads me to believe that I am also now suffering from a caffeine or artificial sweetner sensitivity or allergy; thoughts?

SOUPS Newbie
SOUPS
Posted
  • Author

Went to Gastro doc today and recieved the following results:

HLA-DQ2 - Negative

HLA-DQ8 - Positive

HLA-DQA1 - 03

HLA-DQB1 - 0301

HLA-DQBQ - 0302

ANTI-GLIADIN IGA

GLIADIN AB IGA - 13 (OUT OR RANGE - EQUIVOCAL)

GLIADIN AB IGG - 12 (OUT OF RANGE - EQUIVOCAL)

TISSUE TRANSGLUTAMINASE AB IGA

AB, IGA - 3 (NEGATIVE)

TSH - 4.48 (HAVE BEEN ON TIROSINT FOR 1 WEEK, TESTING AGAIN IN 3 WEEKS)

SOUPS Newbie
SOUPS
Posted
  • Author

Any input?

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Skylark Collaborator
Skylark
Posted

You have a "celiac" gene and borderline anti-gliadin. Developing celiac disease is a process. If you want an educated guess, I'd say you're partway there. Your villi may look OK but going off gluten is a really good idea and you will probably feel much better.

Marlie Apprentice
Marlie
Posted

The reason why I stated a full Celiac Panel is because my child on her first Celiac Panel only tested for tTG and EMA which were both negative. However two months later a full Celiac Panel was given and with that both DGP tests and they were positive and her Total IgA was on the low side of normal. If it wasn't for the full Celiac Panel we would not have realized she had Celiac.

SOUPS Newbie
SOUPS
Posted
  • Author

The reason why I stated a full Celiac Panel is because my child on her first Celiac Panel only tested for tTG and EMA which were both negative. However two months later a full Celiac Panel was given and with that both DGP tests and they were positive and her Total IgA was on the low side of normal. If it wasn't for the full Celiac Panel we would not have realized she had Celiac.

So this wasn't the full panel then?

Marlie Apprentice
Marlie
Posted

The initial test done was only tTG Iga and EMA IgA which were both negative. To be honest I didn't even know they did it but the doc was looking for autoimmune diseases. Two months later she got really sick and by sheer luck the hospital ordered a celaic panel but never told me. I got a phone call a few weeks later stating she had positive labs for celiac. The panel they did at hospital was sent to promytheus labs in california and included the two tests above and a total serum IgA and the DGP IgA and DGP IgG. Only the two dgp labs were positive.

SOUPS Newbie
SOUPS
Posted
  • Author

I'm just going to go gluten-free for awhile and see what happens. I guess celiac is very common with thyroid problems. I also cannot tolerate caffeine anymore, not sure if it's because my stomach is in so much distress from gluten or if it's something completely aside from it.

jlee2 Rookie
jlee2
Posted

I truly feel for you. I also had borderline bloodwork (10 years ago now) and inconclusive blood test results. I think it's extremely unfair that they did not biopsy you. I work in histopathology ( we are the ones who get all the biopsy results and study each one under the microscope ) and if any of our docs do a scope they biopsy no matter what. Even if it looks totally normal. I also feel so bad for you regarding your insurance. It's things like that that make me so grateful for my healthcare in Canada. There was 4 years in a row where I had a scope and colonoscopy done yearly and never paid a cent. If I was you I would fight fight fight your insurance company. In this world you have to be your own advocate. I'm sure if the head honcho of your insurance company spent one day with your symptoms he would change his mind. Best of luck to you and if all else fails just do a gluten-free diet yourself!!!

SOUPS Newbie
SOUPS
Posted
  • Author

Thank you for your kind words and I also hope and pray for a solution to my problems. I am 4 days gluten-free now, so I'll continue to be gluten-free until I hear from my insurance appeal. I am only in week 2 of my thyroid medication, so we'll see what happens with both as time passes. Some days I feel completely motivated and inspired and others I feel completely depressed and hopeless; I just try to remind myself that it won't be like this forever, it can't be. Although my energy right now is extremely low, I continue to push myself through my workouts and runs, in hopes that its better for me to keep up a healthy level of exercise. I rest on the days that I feel like I cannot do anything and do what I can on the days that I feel okay. Something will break soon, a diagnosis or me... hoping its not me first.

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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