Your gut health is important and sometimes it can play an important role in the management of other health conditions such as lipedema. This blog will review research that examines the incidence of the genetic markers for Celiac disease called HLA-DQ-2 and HLA-DQ8 in women who have lipedema. This blog does not substitute for an individualized nutrition assessment by a registered dietitian.
Lipedema is also known as “painful fat syndrome”. It is a connective tissue disorder which triggers the body to create fibrotic fatty tissue instead of normal healthy fat tissue. This fibrotic fat accumulates mostly on the hips and thighs but can sometimes go all the way to the ankles and can also affect the arms. It is genetic, and driven by hormones but may also have an auto-immune component to it.
It results in a build-up of fat that looks like cellulite – often described as orange peel skin. You may also be able to feel nodules or squishy lipomas under the skin. In addition, your legs can be achy or painful, you may bruise easily, your legs can feel cold and oddly, you set off the body scanners at the airport, which usually flag you for a pat-down body search.
In this study, researchers are comparing women with and without lipedema to the incidence of the genetic defect that is associated with Celiac Disease. But before I get to the study information, let’s first discuss Celiac Disease and gluten.
What is Celiac Disease?
Celiac disease is an autoimmune disorder triggered by consumption of gluten. It is thought to be caused by a combination of genetic, immunological and environmental factors (Amato, 2023).
Celiac disease, formally called Celiac sprue is an autoimmune condition in which the immune system attacks the small intestines when gluten is present. The result is that the small intestinal villi are flattened and the body experiences a decreased absorption of important nutrients. There can also be symptoms such as abdominal pain, bloating and diarrhea. But it is possible to have asymptomatic Celiac disease.
What is Gluten?
Gluten is a protein found in wheat, rye, barley and some types of oats and is the ingredient that provides elasticity to bread (Wieser, 2021). It is found in flour which is used to make bread, pasta, crackers, cakes, pancakes and more. It can also be present in small amounts in many packaged foods, so label reading is very important to know which foods have gluten and which ones don’t.
Which Grains are Gluten Free?
A gluten free diet does not mean a grain-free diet. There are some grains and pseudo-grains that are naturally gluten free, and these include (Wieser, 2021):
- Rice
- Corn
- Sorghum
- Millet
- Amaranth
- Buckwheat (this is not wheat)
- Quinoa
- Oats that have less than 20 mg gluten per kilogram
Lipedema and Gluten Research Study
Ninety five women with lipedema who were patients of the Amato Institute Vascular Surgery Department in San Paulo, Brazil were included in this investigation. First the patients were tested for Celiac Disease with a total serum IgA and anti-transglutaminase IgA antibodies.
It’s important to note that, for an IgA tissue transglutaminase blood test to be accurate, you need to be consuming gluten in your diet. In other words, you can’t start the gluten free diet before this blood test if you want an accurate result.
This test is looking for anti-bodies that your body produces against gluten, and you would only produce these if you were eating gluten. In this study they included both women who were already on a gluten free diet as well as those that weren’t, which would decrease the accuracy of the test for those already gluten free.
But, that was just a qualifying blood test for the study. The main analysis of this research was to look at HLA-DQ2 and DQ-8 and assess if there is a higher frequency of positive tests in women who have lipedema compared to the general population.
What are HLA-DQ2 and DQ-8?
HLA stands for histocompatibility antigen. The genes for histocompatibility alleles DQ-2 and DQ-8 are on chromosome 6p21 and are the most significant factor that would predispose someone to Celiac Disease (Amato, 2023).
Those who carry these at-risk alleles have an estimated risk of developing Celiac Disease from 36-53%, with a higher risk before the age of 20 (Amato, 2023). Keep in mind, it is possible to carry the DQ-2 or DQ-8 allele and not have Celiac disease, so it is not used to diagnose Celiac Disease, only to say that you have the genetic predisposition to developing it.
But, for those that have Celiac Disease 98.6% of them have the HLA-DQ-2 or DQ-8 alleles. This is called a negative predictive value, in other words, if you test negative for HLA-DQ-2 or HLA-DQ-8, it’s unlikely that you have Celiac Disease as only 1.4% of people with Celiac Disease are negative for these alleles.
This table shows the results of the analysis.
| Test | % of Lipedema Patients | % of General Population |
| HLA-DQ-2 | 47% | 41% |
| HLA-DQ-8 | 22% | 11% |
| Any (DQ-2 or DQ-8) | 61% | 54% |
| Both (DQ-2 + DQ-8) | 7% | 1%* |
*statistically significant
As you can see in the chart 61% of women with lipedema had either HLA-DQ-2 or HLA-DQ-8 compared with 54% of the general population.
Conclusions of Gluten and Lipedema Analysis
The authors of this study concluded that their data suggests a possible association between the presence of HLA-DQ-2 or HLA-DQ-8 or both and the inflammation seen in lipedema, especially when a woman with lipedema is eating gluten.
But, they point out, that although the data points to an association between HLA-DQ-2 and HLA-DQ-8 and lipedema, this does not establish that one causes the other.
In addition, using the HLA-DQ-2 and HLA-DQ-8 blood test to diagnose lipedema, would not be accurate, as 39% of the patients in this study with confirmed lipedema had no HLA allele. Finally, that further research is needed to establish if there is benefit from a gluten free diet for managing lipedema.
Should I Start A Gluten Free Diet for My Lipedema?
In my clinical practice as a registered dietitian, I do NOT recommend a gluten free diet UNTIL you first have a tissue transglutaminase antibodies (tTG-IgA) blood test. If this is positive, you will need to continue to eat gluten until you have a small bowel biopsy with a gastroenterologist. This is very important and I wouldn’t want you to skip this important step.
What If I Test Positive for Celiac Disease?
If you are diagnosed with Celiac disease, there is significant impact on your nutrition. There is no medicine for Celiac Disease, the treatment is a strict gluten free diet for life. If you have Celiac Disease and consume gluten this could bring on symptoms such as abdominal pain, bloating or diarrhea, cause damage to your intestinal mucosa, and if this is long term, then there is increased risk of certain cancers, namely small intestinal adenocarcinoma, esophageal cancer, melanoma and non-Hodgkin’s lymphoma (Alijada, 2021).
Another long term risk of Celiac Disease is decreased bone mineral density. This can put you at higher risk of bone fracture and low bone mineral density. This is thought to be from a low level of calcifediol, a form of vitamin D produced in the liver (Aljada, 2021).
Keep in mind, a gluten free diet should not just focus on avoiding gluten. You need to pay attention to your diet quality and aim to include fruits, vegetables, fish, meat, and non-gluten whole grains such as teff, quinoa, buckwheat (this is not wheat), and millet. Ideally, you don’t want to rely on too many refined grain processed foods.
Even with a healthy gluten free diet, you need to be patient, it may take two to five years for your intestinal mucosa to recover (Alijada, 2021). Sadly complete recovery of the intestinal health is less likely in older individuals (Alijada, 2021).
In addition to seeing a gastroenterology for follow-up biopsies, you may want to assess your bone mineral density with a DEXA scan and Celiac Disease can affect bone formation (Alijada, 2021).
You can’t always rely on your symptoms to determine your diet. You may think you can “get away” with eating certain gluten containing foods as they don’t bother you, but keep in mind, they may still be doing damage to your small intestines, so it’s best to be strict with avoiding gluten.
Gluten Contamination
Unintentional contamination can occur in the home with cutting boards, butter dishes, toasters, air fryers, convection ovens and any shared contact point. Eating away from home, especially in restaurants can also be a source of gluten exposure. One study done in Europe found that about one-third of people with Celiac Disease are exposed to gluten, despite their best efforts (Wieser, 2021).
Both natural and certified gluten-free foods can be contaminated with gluten above the accepted threshold of 20 mg gluten per kg of product (Wieser, 2021). While most people can tolerate contamination of 10 mg of gluten per day, it’s possible that you may be more sensitive and react to even this small amount (Wieser, 2021). When these researchers examined studies from around the world – including Canada and USA, they concluded that 0.5-36% of products are above the acceptable threshold of gluten. This includes both “gluten-free” labelled products as well as products naturally free of gluten.
Restaurant contamination in the USA was also tested. The research found that 32% of restaurant meals identified as “gluten free” contained gluten. The most likely culprits were pizza and pasta (Wieser, 2021).
Vital Gluten
Vital gluten is another source of contamination. Vital gluten is sometimes called “hidden gluten”. It is a by-product of wheat starch. It is contained in many processed foods, medication and some cosmetics and toothpastes. Checking the ingredient label can help you to spot it. If you see “may contain gluten” on the label, then avoid. A study tested lip balm, lip gloss, lipstick and body lotion found that there was no detectable levels of gluten and concluded that unless you are consuming the product orally, then absorbing gluten through the skin is not likely (Thompson, 2012).
Vital gluten is used as a thickener due to its water binding abilities in foods like ice cream, coffee creamer, instant pudding, soups, sauces, ketchup, marinades and dressings, chewing gum, chewy candies and fruit chews (Wieser, 2021). It has replaced gelatin in vegetarian and vegan products. In some products it is used to bind the added vitamins and minerals to the food, this is true for fortified corn flakes, puffed rice or grain berry cereals. Finally, it is used to get salt and seasons to adhere to a food such as dry roasted nuts.
Vital gluten is also used in soy sauce, and it binding meat to provide texture to meat chunks, canned hams and poultry rolls, sausages. It is also used in vegan cheeses.
In the medical community, vital gluten can be contained in medications as a filling agent, in dialysis solutions, in enteral nutrition products and in blood plasma substitutes. Finally, vital gluten can be contained in mouthwashes, lipsticks and even toothpaste (Wieser, 2021).
Label Reading to Avoid Gluten
Read the labels of your foods as well as lip balms, lipsticks, toothpaste and other products you apply to your mouth and if you are gluten free, then avoid these (nationalceliac.org):
- Wheat
- Barley
- Malt
- Rye
- Oats
- Triticum vulgare
- Hordeum volgare
- Secale cereals
- Avena sativa
Monitoring Gluten Free Diet
Ongoing monitoring with blood work can help you determine if you are being exposed. Repeat small bowel biopsies with your gastroenterologist are the most reliable way to monitor Celiac Disease and the health of your intestines.
What If I Test Negative for Celiac, Can I Still do a Gluten Free Diet for my Lipedema?
If you tested negative for tissue transglutaminase antibodies (tTG-IgA) while still eating gluten, in other words, no Celiac Disease, then yes, you can try the gluten free diet. But, please don’t try it before you have the tissue transglutaminase antibodies (tTG-IgA) blood test first! The reason I am so adamant about this is, it is important to get a diagnosis – if you do in fact have Celiac Disease and the tTG-IgA test is the first step in getting a diagnosis. What I’ve seen in my practice, is that if people skip the blood test and go straight to the gluten free diet, then report symptom improvement, they are then reluctant to add gluten back to the diet to get an accurate diagnosis and they miss out on this important step.
You might think – why does this matter if I’m going to stick with the gluten free diet anyway? It matters for your medical follow-up – it’s important to have repeat small bowel biopsies to assess the health of your small intestines, to monitor your bone health and there can also be financial implications. Where I live you can claim the added costs of gluten free foods on your tax return- but only when you have a diagnosis. You can also receive additional funds for social assistance- but only when you have the diagnosis. Don’t skip the blood test, its important!
But, keep in mind, the gluten free diet is not risk free. So, only continue with the gluten free diet if there is some benefit to you. You may want to discuss this with your registered dietitian to see if this is the best diet for you.
Risks of Gluten Free Diet
Let me say, that there seems to be a popular idea that the gluten free diet is great, it’s anti-inflammatory and there are no downsides to following it…but the evidence does not support these statements. In a review article published recently, the downsides of the gluten free diet were discussed including (Aljada, 2021):
-Elevated food costs
-Social and psychological barriers
-Nutritional deficiencies
Nutritional concerns with the gluten free diet, include a diet that is low in fiber, iron, folate, calcium and vitamin D (Aljada, 2021). So, gluten free diet is not without its risks and you need to evaluate if the benefits justify the risks for you.
Benefits of Gluten Free Diet
There is some evidence that the gluten free diet can help with ataxia, peripheral neuropathy, autism, depression, schizophrenia and irritable bowel syndrome even in those that don’t have Celiac Disease (Aljada, 2021). The evidence of it helping with either lipedema or lymphedema is not available at this time though. But if you want to try a gluten free diet for your lipedema or lymphedema to see if it will help your symptoms, I suggest you do the following, in this order:
- Track your lymphedema or lipedema symptoms to establish your baseline this can include swelling, pain, heaviness, skin changes, bowel routine, GI upset. You can use a lipedema or lymphedema journal to track.
- Get blood tests for tissue transglutaminase antibodies (tTG-IgA) and the genetic alleles HLA-DQ-2 and HLA-DQ-8
- If negative for tissue transglutaminase antibodies (tTG-IgA) then can proceed with step 5
- If positive for tissue transglutaminase antibodies (tTG-IgA) then get a referral to a gastroenterologist for a small bowel biopsy to inspect the health of your intestines and receive your diagnosis. You will need to pause at this stage and continue eating gluten until your biopsy.
- Begin a strict gluten free diet (don’t just eliminate, bread and pasta, eliminate all sources of gluten, even small amounts)
- Continue to track your symptoms and monitor for change
- If you have Celiac Disease as per step 4, then continue strict gluten free diet for life
- If you don’t have Celiac Disease then let your symptoms guide you as to whether you need to continue or not. If no symptom improvement even with a strict gluten free diet, you can try a gluten challenge to see how you feel. If there is no benefit for you in the gluten free diet, then return to a healthy balanced diet. Read more about diet for lipedema and diet for lymphedema.
Using a lipedema journal is a great way to track your symptoms along with your diet. It’s important to point out that if you test negative for Celiac Disease but feel better when you avoid it, you should consider that you may have one of the following:
- Wheat allergy (diagnosed by an IgE mediated allergic reaction)
- Non-celiac gluten sensitivity (diagnosed with double blind placebo-controlled cross-over gluten challenge) (Cabinallis, 2019)
- Irritable bowel syndrome with sensitivity to FODMAPs (diagnosed by ruling out all of the above and clinical history and exam)
If you have clumsiness or loss of balance, or slurred speech when you eat gluten, consider gluten ataxia. If you have itchy skin or lesions on your elbows, knees, buttocks, back or scalp that is worse with gluten intake, then consider dermatitis herpetiformis.
Future Research on Gluten and Lipedema
These researchers of the lipedema and celiac genetic markers study note that they would like to study whether a gluten free diet is helpful for improving symptoms for women with lipedema and if this depends on whether they are positive for HLA-DQ-2 or HLA-DQ-8 or not. I look forward to reviewing that research for you once it is published. Stay up to date on the latest diet and nutrition research on lipedema and lymphedema by joining my community.
More Information on Lipedema Diet
If you enjoyed this blog, then you should read:
References for Does Gluten make Lipedema Worse?
Aljada B, Zohni A, El-Matary W. The Gluten-Free Diet for Celiac Disease and Beyond. Nutrients. 2021 Nov 9;13(11):3993. doi: 10.3390/nu13113993. PMID: 34836247; PMCID: PMC8625243.
Amato AC, Amato LL, Benitti D, Amato JL. Assessing the Prevalence of HLA-DQ2 and HLA-DQ8 in Lipedema Patients and the Potential Benefits of a Gluten-Free Diet. Cureus. 2023 Jul 9;15(7):e41594. doi: 10.7759/cureus.41594. PMID: 37431427; PMCID: PMC10329849.
Cabanillas B. Gluten-related disorders: Celiac disease, wheat allergy, and nonceliac gluten sensitivity. Crit Rev Food Sci Nutr. 2020;60(15):2606-2621. doi: 10.1080/10408398.2019.1651689. Epub 2019 Aug 12. PMID: 31402697.
Thompson, T and Grace T. Gluten and Cosmetics: Is There a Reason for Concern? Journal of Nutrition and Dietetics. Sept 2012 Vol 112 No. 9 1316-1323.
Wieser H, Segura V, Ruiz-Carnicer Á, Sousa C, Comino I. Food Safety and Cross-Contamination of Gluten-Free Products: A Narrative Review. Nutrients. 2021 Jun 29;13(7):2244. doi: 10.3390/nu13072244. PMID: 34210037; PMCID: PMC8308338.
