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Results came back

Shrek
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Shrek Newbie
Shrek
Posted

Anyone could give me  some insight?? Thank you 😎👉

https://www.dropbox.com/s/c9umo7yxg0el72g/2022-05-31 22.14.50.webp?dl=0 

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Wheatwacked Veteran
Wheatwacked
Posted

image.png.d492f1f5b67524061f420d300c33d1d8.png

Wheatwacked Veteran
Wheatwacked
Posted

No denial for you. How are you feeling? Did your doc give any directions?

Shrek Newbie
Shrek
Posted
  • Author

I had endoscopy and colonoscopy done before the blood test. DR wanted the blood test for confirmation, although i see him Thursday.

I'm currently at walgreens getting some over the counter for stomach pain (inflammation)  esophagus region with some sort or constipation. I stopped all gluten intake last week and was doing well the first 3 days up until yesterday with pain.

trents Grand Master
trents
Posted

Developing a truly gluten-free lifestyle is not as easy as many people think because of cross contamination issues (CC) and the multitude of ways gluten is hidden in the process food supply. This might help: 

 

You also would do well to get some good gluten-free vitamins and supplements. Celiac disease generally results in nutrient deficiencies because of the damage done to the small bowel villi. Get a good senior multi vitamin, a good high potency B-complex, 5000IU of D3 daily and magnesium glycinate or citrate. Make sure they are gluten free. Costco's Nature Made brand is a good choice.

Shrek Newbie
Shrek
Posted
  • Author

I appreciate the information, I'll be making some big changes to my diet. 

Wheatwacked Veteran
Wheatwacked
Posted

Start with the foods on this list to make the transition to GFD and your symptoms improve. Add on foods as you tolerate. The doctor sends you home saying eat gluten free but really has no idea what that means and the trouble starts. Gluten Free Oreos are gluten free and are yummy; are they good for me?

Celiac Disease can lead to malnutrition. Too much vitamins and minerals (hypervitaminosis) is rare in Celiac Disease while deficiencies are common, so don't be afraid to supplement as long as you stay below the NIH Safe Upper Limit, which are low balled anyway. 

You might try Dr Haas's diet for recovery. Even after 7 years GFD I still have gut issues though my life is so much better now, but I've been having increased anorexia so decided to try this old school meal plan. In the past week it has exceeded my expectation. Of course we know now that there is no cure

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE SIDNEY V. HAAS, M.D. It was used from 1920 to 1950 to treat celiac before gluten was identified as the cause. It fell out of favor because once healed the patient was returned to a "normal diet" with gluten so the gains would often be lost. As they say " the baby with the bath water"

>Heretofore it has been impossible in the severe cases to give any carbohydrate without damage, whereas banana is not only well tolerated, but rapidly changes the entire picture of the disease to one of well being. <

Table 1.—The Typical Diet:

  1. Plain milk should not be given
  2. Albumin milk. (whey)
  3. Pot cheese (milk 16 oz.) Farmers or Cottage Cheese (curds)
  4. Banana.
  5. Orange.
  6. Vegetables.
  7. Gelatin.
  8. Meat.
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CatrionaB Rookie
CatrionaB
Posted

Going gluten free is difficult, but it is best if you start with naturally gluten free foods e.g. vegetables, meat and potatoes.

Rice has sometimes a may contain gluten warning. All naturally gluten free grains may be contaminated with gluten. 

Lentils are almost always contaminated with gluten.

Only buy certified gluten free oat products!

Always check ingredients and may contain warnings or buy certified gluten free products!

trents Grand Master
trents
Posted
(edited)

There is a difference between the label "Gluten Free" and the label "Certified Gluten Free". You can be sure the latter has been tested and it has been tested to confirm that it complies with the Certified Gluten Free standard of 10ppm or less of gluten which is stricter than the FDA standard of 20ppm. 20ppm is not good enough for some of the more sensitive celiacs. And if you don't improve much begin to look at oats (even gluten free oats) and dairy as possible culprits whose proteins are close enough to gluten in structure that the cause a celiac-like reaction.

Edited by trents
C4Celiac Contributor
C4Celiac
Posted

I don't find eating gluten free difficult at all.. plenty of certified gluten free products out there.. 

C4Celiac Contributor
C4Celiac
Posted
6 hours ago, CatrionaB said:

 

Lentils are almost always contaminated with gluten.

 

what if they're certified gluten free

trents Grand Master
trents
Posted

Then the

5 minutes ago, C4Celiac said:

what if they're certified gluten free

Then they should be okay. I think the concern is that people would assume that because lentils are a "naturally gluten free" food there could not be an issue with gluten.

Russ H Community Regular
Russ H
Posted
On 6/1/2022 at 7:55 AM, Wheatwacked said:

Table 1.—The Typical Diet:

  1. Plain milk should not be given
  2. Albumin milk. (whey)
  3. Pot cheese (milk 16 oz.) Farmers or Cottage Cheese (curds)
  4. Banana.
  5. Orange.
  6. Vegetables.
  7. Gelatin.
  8. Meat.

I think it might be worth avoiding dairy products while the gut heals. I could not tolerate dairy while I was eating gluten but can now. Some people with coeliac develop lactose intolerance. Also, coeliac disease disrupts the intestinal barrier, allowing intestinal contents to permeate the gut wall. In this case, some people experience an immune reaction to milk casein similar to that of gluten with villi blunting.

Wheatwacked Veteran
Wheatwacked
Posted

Is it the cottage cheese or the extra modifiers?

Cabot Cottage Cheese ingredients: ingredients:  Cultured Pasteurized Skim Milk, Milk, Cream, Cultured Grade A Nonfat Dry Milk, Grade A Whey, Salt, Carrageenan, Locust Bean Gum, Guar Gum, Citric Acid, Lactic Acid, Phosphoric Acid, Natural Flavoring, Modified Cellulose, Potassium Sorbate (to maintain freshness), Vitamin D3, Enzymes.

 Daisy Cottage Cheese: Cultured Skim Milk, Cream, Salt.

Should You Remove Carrageenan from Your Diet?  

"Products with carrageenan may be labeled as “natural,” but limited studies show that carrageenan may promote or cause:

inflammation

bloating

irritable bowel syndrome

glucose intolerance

colon cancer

food allergies

Increased inflammation can lead to a greater likelihood of other diseases, such as:

inflammatory bowel disease

arthritis

tendonitis

chronic cholecystitis, or gallbladder inflammation

One review also suggests that there may be no substantial difference between “food-grade” (undegraded) and degraded carrageenan. Degraded carrageenan is a carcinogenic (cancer-causing) version that isn’t approved. It’s even used to induce inflammation in animal studies. According to Cornucopia, test results of food-grade carrageenan carried at least 5 percent degraded carrageenan. One sample had about 25 percent."

trents Grand Master
trents
Posted

I would also be suspicious of the modified cellulose since there is no source specified.

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    • trents
      How long after being diagnosed with Celiac do you feel better?

      By trents · Posted

      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      How long after being diagnosed with Celiac do you feel better?

      By Nathan. · Posted

      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Recent blood test results check in - TTG- IGA

      By Scott Adams · Posted

      Most likely cross-contamination I believe.
    • cristiana
      How long after being diagnosed with Celiac do you feel better?

      By cristiana · Posted

      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Inhaler problem

      By knitty kitty · Posted

      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
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